Max continued to do well without oxygen assistance, and on Wednesday he ate, slept, and played like normal and would go hours past his 'due' times for pain medications. At 9:30 pm the surgical team decided to take his chest tube out, and he was more upset that they had to hold him down than anything else. I was FINALLY able to hold him and we snuggled up on the chair in his room for several hours. They also decided to take out his IV's since he didn't need morphine (hadn't taken it in 12 hours) Maximus was so very happy about that because it meant he could suck on his fingers again.
Thursday morning the doctors decided that since he was off oxygen, his chest tube was out, his IV's were out, and his vitals were all good....they would send him HOME! We had to rush off to pack up our things and check out of our room. We were home before dinner time! For now they want Maximus to be on Oxygen at night since he had some moments where his oxygen levels dropped into the 80's while he was sleeping, and they cautioned us to watch him carefully when he was taking naps during they day. He needs to 'go easy' for a while to make sure he heals fully and still needs to stay away from people to avoid getting sick (Can you imagine getting a cold after having 1/3 of your lung removed? Yikes!) Eventually, the other parts of his lung will expand and fill the empty space and until that happens he will continue to be immune compromised, even more so now than he was when he first came home. He has received his first Synagis shot (RSV shot) and I pray constantly that he will be safe from RSV, since he is recovering from surgery. S and I will continue to change our clothes and/or shower when we get home from work as well as staying away from public places as much as possible. We are hoping that by summer time we will be able to go out and about with Max, though it is worth it to keep him home if it means keeping him healthy.
We are blessed and we know it, and continue to be speechless from the support, prayers, and kindness from everyone.
Sunday, December 2, 2012
Tuesday, November 27, 2012
Surgery
Maximus was born with a CCAM in his lung, as a reminder we didn't know this until he was born though they can sometimes be detected on ultrasounds. This is a random event 1 in 300,000 babies are born with them, and his has nothing to do with his prematurity, nor did it cause his premature birth. A CCAM is a fluid and air filled mass similar to a cyst. From his CT scan on November 2nd we learned that it was oddly shapped and the largest 'bubble' was 1.5cm and the smallest 'bubble was 5mm. They decided that they wouldn't know exactly what to do until they actually got in there. They also learned that there was a large blood vessel 'feeding' the cyst that they would have to be very careful about to avoid too much bleeding.
Monday was surgery day and the initial plan of action was to do a diagnostic Laparoscopy, Thoracotomy, and lobectomy (removal of his bottom right lobe) of his right lung, in addition to repairing his inguinal hernia. At the last minute the surgeon told us wanted to avoid a Thoracotomy because the recovery and risks will be milder the other way.
They took him back at 2:35 pm and told us to expect him to be done at 5:30pm. We waited in the surgical waiting room after we got our sleeping arrangements figured out. We got a message around 5:30pm telling us he was ok, stable, and they weren't quite done yet. We got the same message at 6:30, stable and they would give us another update in an hour. At 7:00pm they told us he would be heading to the recovery room soon and the surgeon would come meet with us in a few minutes.
The surgeon explained that they had completely deflated his right lung during surgery in order to get the best look at the CCAM. Maximus struggled with that and had some respiratory distress. The surgical team worked hard to keep him stable, but they decided they needed to do a Thoracotomy after all. I'm really really glad they told me this afterwards, but the surgeon reassured me that they never let his oxygen drop low enough to cause any sort of damage. He also explained that the CCAM was rather difficult to get out of the incision site, but they were able to get it taken care of. He told us to give the nurses 30 minutes and if we hadn't heard from anyone (the waiting desk was closed by this point) that we should walk to post-op and ask them where Max was.
At 8:00 on the dot we walked down to find him, and a super nice nurse lead us to the PICU (Pediatric Intensive Care Unit) and we walked in to find them finishing getting him settled. It was the most awful feeling of Deja-vu to see all those familiar machines and monitors, but at least I knew what they all meant and what to expect from them. He was, of course intubated and swollen. He was covered in bright orange stuff and was a little pale, but he was perfect and handsome and peacefully sleeping. He continued to sleep while we got updates and everything was settled before we had to leave. They told us they would be extubating him at 6:30 am so we set our alarms for 5:45 to make it on time.
As I learned from our time in the NICU things always change and they decided to extubate him early so we were surprised to be able to see his face again when we walked in at 6:30 am. It was a hard and blur of a day getting him eating again, keeping his pain at bay, and making sure he knew we were there. I am eternally grateful for every person who has ever decided to be a nurse, because it has got to be such a hard hard job. The doctors decided he was doing so very well, he didn't need to stay in the PICU and he could move to his own room on the 3rd floor in the Pediatric Surgical Recovery Unit. We had to wait until a room opened up, but he was ready whenever one opened up. This was a HUGE surprise for us because we had been told he would spend 3-4 days in the PICU and only go to a room before he was ready to be discharged.
Around 4:00 pm while we were getting Maximus ready to eat again his nasal canula came out and fell on the floor, since he had been at 100% on the lowest setting his oxygen machine would go the RN decided to see what would happen if we left it out.
That was over 6 hours ago. That's right, for the first time in his ENTIRE LIFE Maximus is breathing completely on his own. If he keeps this up, he may not need to even be on oxygen during the day anymore. The thought of bringing him home without being hooked up to an oxygen tank makes me want to cry.
He's hoping he stays oxygen free all night!
Monday was surgery day and the initial plan of action was to do a diagnostic Laparoscopy, Thoracotomy, and lobectomy (removal of his bottom right lobe) of his right lung, in addition to repairing his inguinal hernia. At the last minute the surgeon told us wanted to avoid a Thoracotomy because the recovery and risks will be milder the other way.
They took him back at 2:35 pm and told us to expect him to be done at 5:30pm. We waited in the surgical waiting room after we got our sleeping arrangements figured out. We got a message around 5:30pm telling us he was ok, stable, and they weren't quite done yet. We got the same message at 6:30, stable and they would give us another update in an hour. At 7:00pm they told us he would be heading to the recovery room soon and the surgeon would come meet with us in a few minutes.
The surgeon explained that they had completely deflated his right lung during surgery in order to get the best look at the CCAM. Maximus struggled with that and had some respiratory distress. The surgical team worked hard to keep him stable, but they decided they needed to do a Thoracotomy after all. I'm really really glad they told me this afterwards, but the surgeon reassured me that they never let his oxygen drop low enough to cause any sort of damage. He also explained that the CCAM was rather difficult to get out of the incision site, but they were able to get it taken care of. He told us to give the nurses 30 minutes and if we hadn't heard from anyone (the waiting desk was closed by this point) that we should walk to post-op and ask them where Max was.
At 8:00 on the dot we walked down to find him, and a super nice nurse lead us to the PICU (Pediatric Intensive Care Unit) and we walked in to find them finishing getting him settled. It was the most awful feeling of Deja-vu to see all those familiar machines and monitors, but at least I knew what they all meant and what to expect from them. He was, of course intubated and swollen. He was covered in bright orange stuff and was a little pale, but he was perfect and handsome and peacefully sleeping. He continued to sleep while we got updates and everything was settled before we had to leave. They told us they would be extubating him at 6:30 am so we set our alarms for 5:45 to make it on time.
As I learned from our time in the NICU things always change and they decided to extubate him early so we were surprised to be able to see his face again when we walked in at 6:30 am. It was a hard and blur of a day getting him eating again, keeping his pain at bay, and making sure he knew we were there. I am eternally grateful for every person who has ever decided to be a nurse, because it has got to be such a hard hard job. The doctors decided he was doing so very well, he didn't need to stay in the PICU and he could move to his own room on the 3rd floor in the Pediatric Surgical Recovery Unit. We had to wait until a room opened up, but he was ready whenever one opened up. This was a HUGE surprise for us because we had been told he would spend 3-4 days in the PICU and only go to a room before he was ready to be discharged.
Around 4:00 pm while we were getting Maximus ready to eat again his nasal canula came out and fell on the floor, since he had been at 100% on the lowest setting his oxygen machine would go the RN decided to see what would happen if we left it out.
That was over 6 hours ago. That's right, for the first time in his ENTIRE LIFE Maximus is breathing completely on his own. If he keeps this up, he may not need to even be on oxygen during the day anymore. The thought of bringing him home without being hooked up to an oxygen tank makes me want to cry.
He's hoping he stays oxygen free all night!
Sunday, November 4, 2012
I have a sweet baby boy sleeping in my arms right now, which makes it hard to type, but it's sure worth it. Max turned 7 months old on the 25th of October. He celebrated his first Halloween by dressing up as Baby Batman & we hung out at home passing out candy while Daddy went trick-or-treating with E.
Also, Early Intervention came back to do his second assessment. He is still doing wonderfully. They came the day after he turned 7 months old (4 months adjusted) and he is still beyond his adjusted age!
Language Skills: 5-6 months
Gross Motor: 4-5 months
Cognitive Development: 4-5 months
Fine Motor Skills: 5-6 months
Social Development: 6 months
Self Help Skills: 5 months
16 pounds and 65 cm tall
He is physically very strong and is showing signs of getting ready to eat some 'big boy' foods'
actually, he stole a french fry last week and shoved it straight in his mouth. We got it out before he swallowed or choked on it, but for the next few minutes he kept smacking his lips. Little stinker!
On Friday we went down to PCMC-Same Day Surgery so that they could do a CT scan of his lung. Since he is still a baby they needed to put him under with anesthesia so they could get clean images. On Thursday the nurses called me to go over the schedule, he wasn't supposed to eat after 8am, and since he has never been under anesthesia they told me he and I were going to spend the night. S and E made arrangements to stay with his sister in Salt Lake, and we packed our bags. I was distraught at the fact that we would be spending the night, because that made the whole thing so much scarier. I distracted myself by packing a bag for E with some new books, stickers, coloring books, crayons and her favorite (non-perishable) snacks since it was going to be a long day for her.
Turns out, I didn't need to! PCMC had so many fun toys in their waiting room she only ended up coloring a few pages and playing with a few stickers since she was so busy playing with the toy kitchen and the other activities. Once they took Maximus back to get his CT we waited about an hour, then the nurses came to get me and take me to the recovery room. The nurses couldn't get him to take a bottle of pedialyte which worried me, until they had me try. He drank the whole thing down in 10 minutes flat, apparently he just wanted his mommy. Once Max moved out of the recovery room S and E joined us and she was so sweet to watch her check him over to make sure he was okay. She patted his back and kissed his head while asking me if he was okay. He sure was! In fact, he did so well and was my normal happy boy with just a little extra sleeping at the 4 hour mark they started talking to the Doctor if we could just go home. S and E had left after making sure all was well so that E could go play with her cousins. I was so excited to let them know that we might be going home.
Sure enough at the 5 hour mark they decided he was doing wonderfully and we didn't need to spend the night. I was so relieved! We loaded up, grabbed some dinner in the drive-thru, and went HOME!
We will meet with the follow-up NICU team on Monday, the pediatrician on Friday, and then we will finalize our plan of action. The CT scan will show us if they are going to be able to remove just the mass in his lung or if they will need to remove the bottom lobe of his lung. They didn't tell me what they found, but I will just have to accept that they will tell me when it is time. Surgery has been tentatively scheduled for the end of November if all goes well with insurance approval. Cross your fingers for us!!
Thank you for all the well wishes, the prayers, and the kindness from everyone. We are so grateful.
Also, Early Intervention came back to do his second assessment. He is still doing wonderfully. They came the day after he turned 7 months old (4 months adjusted) and he is still beyond his adjusted age!
Language Skills: 5-6 months
Gross Motor: 4-5 months
Cognitive Development: 4-5 months
Fine Motor Skills: 5-6 months
Social Development: 6 months
Self Help Skills: 5 months
16 pounds and 65 cm tall
He is physically very strong and is showing signs of getting ready to eat some 'big boy' foods'
actually, he stole a french fry last week and shoved it straight in his mouth. We got it out before he swallowed or choked on it, but for the next few minutes he kept smacking his lips. Little stinker!
On Friday we went down to PCMC-Same Day Surgery so that they could do a CT scan of his lung. Since he is still a baby they needed to put him under with anesthesia so they could get clean images. On Thursday the nurses called me to go over the schedule, he wasn't supposed to eat after 8am, and since he has never been under anesthesia they told me he and I were going to spend the night. S and E made arrangements to stay with his sister in Salt Lake, and we packed our bags. I was distraught at the fact that we would be spending the night, because that made the whole thing so much scarier. I distracted myself by packing a bag for E with some new books, stickers, coloring books, crayons and her favorite (non-perishable) snacks since it was going to be a long day for her.
Turns out, I didn't need to! PCMC had so many fun toys in their waiting room she only ended up coloring a few pages and playing with a few stickers since she was so busy playing with the toy kitchen and the other activities. Once they took Maximus back to get his CT we waited about an hour, then the nurses came to get me and take me to the recovery room. The nurses couldn't get him to take a bottle of pedialyte which worried me, until they had me try. He drank the whole thing down in 10 minutes flat, apparently he just wanted his mommy. Once Max moved out of the recovery room S and E joined us and she was so sweet to watch her check him over to make sure he was okay. She patted his back and kissed his head while asking me if he was okay. He sure was! In fact, he did so well and was my normal happy boy with just a little extra sleeping at the 4 hour mark they started talking to the Doctor if we could just go home. S and E had left after making sure all was well so that E could go play with her cousins. I was so excited to let them know that we might be going home.
Sure enough at the 5 hour mark they decided he was doing wonderfully and we didn't need to spend the night. I was so relieved! We loaded up, grabbed some dinner in the drive-thru, and went HOME!
We will meet with the follow-up NICU team on Monday, the pediatrician on Friday, and then we will finalize our plan of action. The CT scan will show us if they are going to be able to remove just the mass in his lung or if they will need to remove the bottom lobe of his lung. They didn't tell me what they found, but I will just have to accept that they will tell me when it is time. Surgery has been tentatively scheduled for the end of November if all goes well with insurance approval. Cross your fingers for us!!
Thank you for all the well wishes, the prayers, and the kindness from everyone. We are so grateful.
Friday, September 28, 2012
6 months old
Today was Max's 6 month (3 month adjusted) appointment with the pediatrician, which meant the dreaded shots!
poor little man didn't know what was coming!
He weighted 13 pounds 10 oz
50th percentile adjusted
1st percentile actual (HE IS ON THE CHART! Hallelujah! )
23.6 inches tall
50th percentile adjusted
0 percentile actual
Max is still exceeding all of his 3 month milestones and is even meeting some of his 6 month milestones.
50th percentile adjusted
1st percentile actual (HE IS ON THE CHART! Hallelujah! )
23.6 inches tall
50th percentile adjusted
0 percentile actual
Max is still exceeding all of his 3 month milestones and is even meeting some of his 6 month milestones.
He is officially sleeping between 5-6 1/2 hours at night, but he still refuses to sleep before midnight. He can sit up for a moment or two at a time by himself, loves the bumpo, the baby backpack, and always wants to have something in his mouth (especially his fingers)
Last night Max laughed at his daddy for the first time, but has been laughing at his sister for almost a month now. Apparently, he thinks she is funnier than us because E can get him laughing pretty hard, but we can do or say the exact same thing and he just smiles at us. He also thinks drooling and blowing bubbles is funny. He loves to try and mimic noises we make, but likes it even more when we mimic his noises.
Max LOVES to smile, he is a very happy baby. He's already forgiven me for those dang shots!
Max has officially been cleared neurologically,but we will be heading back down to PCMC for a surgical consult as well as meeting with a pulmonologist. Even though the plan is to wait to do surgery on the CCAM until spring, they still want to do surgery for his hernia soon.
He has also been approved for 5 rounds of Synagis starting December 1st. RSV season will be nerveracking but Synagis should help it not be as terrifying.
Max just keeps growing bigger and bigger, and we couldn't be happier. We sure love this happy boy and are so happy he is home with us. It is amazing how much he has grown in the last 6 months.
He has also been approved for 5 rounds of Synagis starting December 1st. RSV season will be nerveracking but Synagis should help it not be as terrifying.
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| one day old |
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| One Month old |
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| two months old |
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| 6 months old! |
Wednesday, September 5, 2012
Quick Update
Hello!!
Long time no see! Things are crazy over here! Can you believe Max is now 5 months old, and has been home for 2 1/2 months?
Max is still on house arrest, still on oxygen, and still getting BIG BIG BIG!
At our last Pediatrician appointment we learned:
He is gaining just over an ounce per day steadily, meaning he is 12lbs 2 oz today
His Hematocrit levels are good (I don't know the exact number)
He will probably be on oxygen for the whole winter
Surgery probably won't happen until Spring
RSV is SCARY
We are making some changes to his eating
He is a happy and strong boy!!
Yay!
Long time no see! Things are crazy over here! Can you believe Max is now 5 months old, and has been home for 2 1/2 months?
Max is still on house arrest, still on oxygen, and still getting BIG BIG BIG!
At our last Pediatrician appointment we learned:
He is gaining just over an ounce per day steadily, meaning he is 12lbs 2 oz today
His Hematocrit levels are good (I don't know the exact number)
He will probably be on oxygen for the whole winter
Surgery probably won't happen until Spring
RSV is SCARY
We are making some changes to his eating
He is a happy and strong boy!!
Yay!
Sunday, July 29, 2012
4 months old
Here are some pictures to show how much he has grown.
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| July 25th |
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| July 25th |
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| June 20th vs. July 20th |
Saturday, July 21, 2012
big, Big, BIG!
UPDATE:
Maximus will be 4 months old on Wednesday
Start Weight 3/25
2 lbs 1 oz
14 1/4 inches
Home Weight 6/19
6 lbs 6 oz
19 1/4 inches
1st Dr. Appointment 6/21
6 lbs 8oz
19 1/4 inches
2nd visit 6/29
7 lbs 2 oz
20 inches
Follow up 7/10
7 lbs 11 oz
20 inches
4 month check-up 7/20
8lbs 7oz
21 inches
He's gained an ounce a day pretty steadily since he has been home! (12 oz in the last 10 days! over 2 pounds since he's been home!!) as well as grown 2 1/4 inches. He had to get his immunizations this time, but again he handled them totally fine.
Still on oxygen--will be for a while. No biggie, except I'm ready to take a sledgehammer to his pulse-ox machine. I cannot wait for the day I can casually pick him up and move from room to room without dragging 2 machines with me. Oh, and the day I can dress him without unhooking machines and being able to quickly popping an outfit over his head will be so nice!
We have a surgical consult scheduled for the first week in August at Primary. We should find out when we will schedule the 1st surgery (hopefully the 2nd won't be for a year) and get a better idea about the severity of his Chronic Lung Disease.
He is doing GREAT! Early Intervention is having a Nutritionist visit this week as that is his only 'issue' currently that they can help him with. (not really any issues, but based on his ACTUAL age there are a few) Its possible they will just 'track' him for a few months until he is old enough to work with others in the program.
Maximus will be 4 months old on Wednesday
Start Weight 3/25
2 lbs 1 oz
14 1/4 inches
Home Weight 6/19
6 lbs 6 oz
19 1/4 inches
1st Dr. Appointment 6/21
6 lbs 8oz
19 1/4 inches
2nd visit 6/29
7 lbs 2 oz
20 inches
Follow up 7/10
7 lbs 11 oz
20 inches
4 month check-up 7/20
8lbs 7oz
21 inches
He's gained an ounce a day pretty steadily since he has been home! (12 oz in the last 10 days! over 2 pounds since he's been home!!) as well as grown 2 1/4 inches. He had to get his immunizations this time, but again he handled them totally fine.
Still on oxygen--will be for a while. No biggie, except I'm ready to take a sledgehammer to his pulse-ox machine. I cannot wait for the day I can casually pick him up and move from room to room without dragging 2 machines with me. Oh, and the day I can dress him without unhooking machines and being able to quickly popping an outfit over his head will be so nice!
We have a surgical consult scheduled for the first week in August at Primary. We should find out when we will schedule the 1st surgery (hopefully the 2nd won't be for a year) and get a better idea about the severity of his Chronic Lung Disease.
He is doing GREAT! Early Intervention is having a Nutritionist visit this week as that is his only 'issue' currently that they can help him with. (not really any issues, but based on his ACTUAL age there are a few) Its possible they will just 'track' him for a few months until he is old enough to work with others in the program.
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