Our little rock star is going straight from the PICU to home. He made huge strides overnight and the doctors concluded that it was safe to send him home, rather than moving him onto the floor for one more night as originally planned. There are no beds available in the infant surgery unit and Max's roomate would be an 11 year old girl. They left it up to us, and we feel confident that we will all do best at home. If they were able to keep us in the wonderful PICU, I don't think we would ever leave (although our favorite nurse, Leah, assures us that we would get sick of all the beeping)!
And we miss Maya (who happens to be home sick with a fever). Oh, how we miss her.
It is bittersweet leaving the PICU. We will deeply miss the amazing nurses who have become our collective security blanket - Alma's quiet and gentle touch, Leah's unbelievable bedside manner and friendly company, and Becky...oh Becky...the nurse who saved Max's life. We will never forget these women. Doctors are, of course, critical and revered, but I believe it's the nurses who are the true heros.
So off we go in the next hour or two, armed with Max's script for oxycodon and a whole lotta TLC. As long as we keep on top of the tylenol and the hard stuff, his pain is quite manageable. Every day is a new day on his road to recovery, and we are seeing more and more glimmers of the happy, rolly polly, 7 month old we all know and love.
In a way it feels similar to the morning we left the hospital with our teeny tiny baby after his birth. Sad to say goodbye, yet ready to start the new chapter of our lives. Our beautiful, blessed life.
Saturday, February 13, 2010
Friday, February 12, 2010
What a difference 14 hours makes
Well it's been about 14 hours since craziness struck, and I'm happy to report that Max has done a 180! He has taken two bottles and has now breastfed on Kami. He hasn't really cried today and is happily sleeping. It was great that both Krista and my parents came up today. It's a nice break as well as a good reliever. Kami and I got to go to a sleep room and nap for a little.
Some of you know that I don't drink coffee, but in serious situations where I need a pick up I will. So I went and got a Quad Espresso from Starbucks (yeah, that's 4 shots of espresso). I don't think I will fall asleep for a while because man I am wired! So I will sit here and watch Max's stats on his monitor like a cranked up day trader and let Kami nap a little.
On a serious note, thank you for all the comments and well wishes for our little man. My Mom's classes even wrote individual cards for Max. I think we have about 50 cards from 5th and 6th graders. Kids we don't even know...praying or saying we love you. It's both humbling and touching.
I am so grateful that we have a good support network. From Krista taking the days off to be with Maya, to my parents driving up from Geneva to be with us, to Peter flying back from San Diego and watching Maya. For all you parents out there, you never stop loving, worrying, supporting or just being a parent to your kids. I'm 33 and there's still something that is comforting when my parents are around. It's weird, I know they don't have the answers, no magic, no superpowers to make things better, but there's always that aura that everything will be alright because they're with me. I guess as a parent that's one way you know you've done your job well - you're kids still want you to be there.
So tonight I will sit and meditate (after I day trade on Max's vitals). Think how I can always be there for my kids in a time like this. Think of how, even if I don't have the answers, I can assure them they will be ok. If I don't have the magic, how I can conjure up tranquility and relief. If I don't have superpowers (which if I did it would have to be flying, don't know how this would help any situation but still my power of choice), how I can carry the weight of their problems on my shoulders so they don't have to. How I can be a parent like the parents Kami and I have.
Some of you know that I don't drink coffee, but in serious situations where I need a pick up I will. So I went and got a Quad Espresso from Starbucks (yeah, that's 4 shots of espresso). I don't think I will fall asleep for a while because man I am wired! So I will sit here and watch Max's stats on his monitor like a cranked up day trader and let Kami nap a little.
On a serious note, thank you for all the comments and well wishes for our little man. My Mom's classes even wrote individual cards for Max. I think we have about 50 cards from 5th and 6th graders. Kids we don't even know...praying or saying we love you. It's both humbling and touching.
I am so grateful that we have a good support network. From Krista taking the days off to be with Maya, to my parents driving up from Geneva to be with us, to Peter flying back from San Diego and watching Maya. For all you parents out there, you never stop loving, worrying, supporting or just being a parent to your kids. I'm 33 and there's still something that is comforting when my parents are around. It's weird, I know they don't have the answers, no magic, no superpowers to make things better, but there's always that aura that everything will be alright because they're with me. I guess as a parent that's one way you know you've done your job well - you're kids still want you to be there.
So tonight I will sit and meditate (after I day trade on Max's vitals). Think how I can always be there for my kids in a time like this. Think of how, even if I don't have the answers, I can assure them they will be ok. If I don't have the magic, how I can conjure up tranquility and relief. If I don't have superpowers (which if I did it would have to be flying, don't know how this would help any situation but still my power of choice), how I can carry the weight of their problems on my shoulders so they don't have to. How I can be a parent like the parents Kami and I have.
A tiny sliver of peace
Max was finally given the okay to eat and took 4ozs of pumped breastmilk in a bottle. I was able to hold him for the first time since 4pm last night. He is now fast asleep on my lap and I will pee my pants before I disturb him. He's a perfect peaceful little angel...the most beautiful boy ever made.
We love you, Max
We love you, Max
Rough Night
We all had a rough night, but it was Max who had the roughest of all. Even though he was sedated for much of it, we had one incident. Not going into specific details, he is fine now. Kami is sleeping, and I'm on watch right now.
It's heartwrenching to see your little guy going through so much. If I start to think of it, my emotions get the best of me so for now I will sit by his bedside and just concentrate on seeing his chest rise and fall. I love you so much Max.
Thank you to all who are following this and sending your thoughts and prayers for him. We are not out of the woods yet, but some glimmers of good stuff already have happened today. At 6 am he found his fingers and started to suck on them. This is great news as this is how he normally sooths himself. He was also very alert and looked at me for quite a long time. I stroked the top of his head to reassure everything was gonna be ok, and he gently fell back asleep.
Today should be much better as the doctors should allow Max to breastfeed again. I have to believe that this will do wonders for him as he hasn't eaten anything in over 26 hours.
Well I'm going to report back into my post.
It's heartwrenching to see your little guy going through so much. If I start to think of it, my emotions get the best of me so for now I will sit by his bedside and just concentrate on seeing his chest rise and fall. I love you so much Max.
Thank you to all who are following this and sending your thoughts and prayers for him. We are not out of the woods yet, but some glimmers of good stuff already have happened today. At 6 am he found his fingers and started to suck on them. This is great news as this is how he normally sooths himself. He was also very alert and looked at me for quite a long time. I stroked the top of his head to reassure everything was gonna be ok, and he gently fell back asleep.
Today should be much better as the doctors should allow Max to breastfeed again. I have to believe that this will do wonders for him as he hasn't eaten anything in over 26 hours.
Well I'm going to report back into my post.
Thursday, February 11, 2010
Pain and Hunger...
I am not sure which is harder to witness as a mother - seeing your child in pain or denying a hungry baby nourishment. They are both torture.
There is no question, this has been one of the longest days of our lives - maybe even the longest. I would gladly give birth without drugs 100 times over again if it meant never having to see my children go through something like this.
Without going into all of the nitty gritty details, things took a downward turn once Max got into the recovery room. What should have been a short visit before admitting him onto "the floor" ended up being a 4.5 hour stay and a trip to "the unit" where we are now and will be spending the night. Despite the wonder efforts of our postop nurse (who did not leave Max's bedside), the pain management team and the anesthesiologist, they could not get him comfortable. His obvious discomfort combined with some breath holding and decreased oxygen saturation sealed the deal - ICU bound we were. Lots of morphine and a little valium later, Max is getting some rest.
Dad and Karen came to visit a little while ago, bringing pizza from Santarpios and cannolis from Maria's. It was a nice treat after a long day of standing by Max's bed, holding his oxygen tube.
Kris and I are staying the night and hope to take turns resting a bit.
Max is not allowed water, breastmilk or food of any kind until the morning. It has been especially hard since he is breastfed and associates me with food (and nursing with comfort). I can only imagine what 24 plus hours without nursing is like for a 7 month old.
Good night.
There is no question, this has been one of the longest days of our lives - maybe even the longest. I would gladly give birth without drugs 100 times over again if it meant never having to see my children go through something like this.
Without going into all of the nitty gritty details, things took a downward turn once Max got into the recovery room. What should have been a short visit before admitting him onto "the floor" ended up being a 4.5 hour stay and a trip to "the unit" where we are now and will be spending the night. Despite the wonder efforts of our postop nurse (who did not leave Max's bedside), the pain management team and the anesthesiologist, they could not get him comfortable. His obvious discomfort combined with some breath holding and decreased oxygen saturation sealed the deal - ICU bound we were. Lots of morphine and a little valium later, Max is getting some rest.
Dad and Karen came to visit a little while ago, bringing pizza from Santarpios and cannolis from Maria's. It was a nice treat after a long day of standing by Max's bed, holding his oxygen tube.
Kris and I are staying the night and hope to take turns resting a bit.
Max is not allowed water, breastmilk or food of any kind until the morning. It has been especially hard since he is breastfed and associates me with food (and nursing with comfort). I can only imagine what 24 plus hours without nursing is like for a 7 month old.
Good night.
He's Done!
He's already done! Doctor Wilson just came out to talk to us. Max did excellent. That was friggin fast, but it went real smooth. Doctor Wilson just had to do it laproscopically (spelling might be screwy here). There was enough tissue that he was able to sew the hole shut instead of patching it with gortex. There was some intestine in the hole and that has now been cleared. The doctor said it was as easy as it gets and it was textbook.
Max is coming out of sedation, and we expect to see him in about 30 minutes.
He will have four incisions, one in his belly button, one in his upper chest, and two on his sides. Very small, less than 4mm, so he can't brag about the knife fight he once had :).
We have pictures of inside of Max that shows the hole and it getting sewn shut. So we are 50% in the clear. We will be 100% when he wakes up.
Max is coming out of sedation, and we expect to see him in about 30 minutes.
He will have four incisions, one in his belly button, one in his upper chest, and two on his sides. Very small, less than 4mm, so he can't brag about the knife fight he once had :).
We have pictures of inside of Max that shows the hole and it getting sewn shut. So we are 50% in the clear. We will be 100% when he wakes up.
It's underway
We just got word from the nurse. He went down fine with the anesthesia. No crying. True champ.
They made their first incision at 10:25. So he's a brave little man, who is so far doing great! They were able to keep his right hand free of needles and tubes so he can sooth himself later by sucking on his fingers. Great job docs!
BTW - Every nurse/doctor stopped by to see Max because of his name. Everyone has commented on what a great strong name he has! I think we really made a great choice.
They made their first incision at 10:25. So he's a brave little man, who is so far doing great! They were able to keep his right hand free of needles and tubes so he can sooth himself later by sucking on his fingers. Great job docs!
BTW - Every nurse/doctor stopped by to see Max because of his name. Everyone has commented on what a great strong name he has! I think we really made a great choice.
He's in
Max has been admitted and is now under. The people here at Children's are extremely nice and very forthcoming with what exactly will happen. Max did great. He fell asleep while all the doctors and nurses talked to us about the procedure. Jay Wilson knows his stuff and he said without a doubt in his mind that we will see Max in a few hours.
I am extremely grateful we have a great hospital so close to us that specializes in his condition. Although this condition is short lived as in four hours he won't have it anymore!
Kami is pumping right now and we are settling in to the waiting area. I think it's time for some food.
More to come...
I am extremely grateful we have a great hospital so close to us that specializes in his condition. Although this condition is short lived as in four hours he won't have it anymore!
Kami is pumping right now and we are settling in to the waiting area. I think it's time for some food.
More to come...
Wednesday, February 10, 2010
On the books
We got word this afternoon that the surgery will begin tomorrow at 8:45am. It's not the first of the day as we had hoped (which would have meant a smaller chance of delay - something very important when you have a fasting baby!), but it will give us some extra time to make it into Boston should the roads be messy from the storm. We are appreciative for that.
We need to arrive at Childrens by 7:15am and plan to leave Nashua at 6am. We'll have to wake Max for his last feeding in the middle of the night, but I don't mind. I'll take any chance I can get right now to snuggle with my little man.
Off to pack our hospital bags and hopefully get a little sleep while we can...
We need to arrive at Childrens by 7:15am and plan to leave Nashua at 6am. We'll have to wake Max for his last feeding in the middle of the night, but I don't mind. I'll take any chance I can get right now to snuggle with my little man.
Off to pack our hospital bags and hopefully get a little sleep while we can...
We're off to see the wizard...
24 hours from now Max will be in the operating room with the best surgeon for his condition...probably in the world. We find comfort in knowing that people travel from all over the globe to have surgery at Boston Childrens. We really are going to be in the best hands.
Still, it is hard not to let your mind journey into that dark place of 'what ifs'. Staying busy has been the best medicine for nerves.
So what is Max getting operated on, anyway?
Max was diagnosed with a Diaphragmatic Hernia of the Morgagni variety back in September when he was taken to the ER in North Conway for a high fever. He was 2.5 months at the time and we were visiting Storyland with the kids and some good friends. The ER doctor ordered a chest x-ray (among taking blood and other exams) to check for pneumonia. All was clear and they sent us home. Diagnosis was a nasty virus and we figured we were through with hospital visits for a long time. We returned from our vacation to find a voicemail on our machine from the radiologist at the hospital, alerting us that he found something that looked like a hernia in Max's chest (which basically means a hole) and that we should follow up with our local pediatrician immediately. Long story short, the ped ordered a second xray which confirmed the initial conern and sent us directly to Childrens in Boston that week. They assured us that there was no bigger expert than Dr Jay Wilson.
Here is a link that explains Max's condition and how they fix it:
http://www.childrenshospital.org/az/Site741/mainpageS741P0.html
We are beyond fortunate that Max has the Morgagni variety and that this was not a life threatening situation. Dr. Wilson did, however, recommend getting it repaired as there is a risk of a bowel obstruction (which can cause death if not treated immediately).
While I wish I had time and know it would be extremely therapeutic to type out all of my fears, my concerns...and hopes - life has other plans. Right now I need to get one child fed and one dressed and off to school. Valentines Day isn't postponing itself either, so we have heart shaped crayons in the oven and paper and markers ready to go. We have boo boos to care for (Maya just stubbed her toe), diapers to change...and it may be beneficial for me to shower for the first time in 3 days!
We'll be updating this site from the hospital as we are told they have Wi-fi. We wanted to start this blog as so many have asked for updates and we figured this was the best way to keep them all in one place. Check back often and please think of Max...
Still, it is hard not to let your mind journey into that dark place of 'what ifs'. Staying busy has been the best medicine for nerves.
So what is Max getting operated on, anyway?
Max was diagnosed with a Diaphragmatic Hernia of the Morgagni variety back in September when he was taken to the ER in North Conway for a high fever. He was 2.5 months at the time and we were visiting Storyland with the kids and some good friends. The ER doctor ordered a chest x-ray (among taking blood and other exams) to check for pneumonia. All was clear and they sent us home. Diagnosis was a nasty virus and we figured we were through with hospital visits for a long time. We returned from our vacation to find a voicemail on our machine from the radiologist at the hospital, alerting us that he found something that looked like a hernia in Max's chest (which basically means a hole) and that we should follow up with our local pediatrician immediately. Long story short, the ped ordered a second xray which confirmed the initial conern and sent us directly to Childrens in Boston that week. They assured us that there was no bigger expert than Dr Jay Wilson.
Here is a link that explains Max's condition and how they fix it:
http://www.childrenshospital.org/az/Site741/mainpageS741P0.html
We are beyond fortunate that Max has the Morgagni variety and that this was not a life threatening situation. Dr. Wilson did, however, recommend getting it repaired as there is a risk of a bowel obstruction (which can cause death if not treated immediately).
While I wish I had time and know it would be extremely therapeutic to type out all of my fears, my concerns...and hopes - life has other plans. Right now I need to get one child fed and one dressed and off to school. Valentines Day isn't postponing itself either, so we have heart shaped crayons in the oven and paper and markers ready to go. We have boo boos to care for (Maya just stubbed her toe), diapers to change...and it may be beneficial for me to shower for the first time in 3 days!
We'll be updating this site from the hospital as we are told they have Wi-fi. We wanted to start this blog as so many have asked for updates and we figured this was the best way to keep them all in one place. Check back often and please think of Max...
Subscribe to:
Posts (Atom)
