Well, apparently I didn't jinx it with last night's post. Mason has continued to do well and is stable with both his oxygen and his labs, so we were sent packing today. We are so thankful that we ended this hospitalization so positively with a reduction in oxygen need and maintained stable labs. Mason is very happy to be home where he can roam around as much as he wants to. He is even showing us how much he can still learn, develop, and grow while in the hospital. Once he gets home, he just wants to strut his stuff...
Tuesday, December 15, 2009
Monday, December 14, 2009
Dare I Say, It Was a Good Day
I know, I might jinx it, but it's worth celebrating the good times, too. Mason started the day needing less oxygen than he needed the previous mornings. He was doing great! I didn't even need to turn up his oxygen during his blood draw this morning - a first! He was actually needing less than 3L and his heart rate was around 100 beats per minute (really good for him!), AND he was in a good mood!! It was great!
Right after starting the steroid and doing his nebulizer, Mason did end up needing a bit more oxygen, but only up to 4L. This lasted for about 3 hours, then once again, his need decreased and he relaxed. He did have a little bit of 'roid rage today, but was fairly easily distracted by talking to Staramama and Pomp-pomp on Skype.
I am so thankful for good days! Please pray that this continues and I didn't just jinx it by putting it in writing!
Right after starting the steroid and doing his nebulizer, Mason did end up needing a bit more oxygen, but only up to 4L. This lasted for about 3 hours, then once again, his need decreased and he relaxed. He did have a little bit of 'roid rage today, but was fairly easily distracted by talking to Staramama and Pomp-pomp on Skype.
I am so thankful for good days! Please pray that this continues and I didn't just jinx it by putting it in writing!
Sunday, December 13, 2009
Mama Bear and Baby Cub
Well, both of us were roaring today. I started it and Mason continued. We started out a little rough with a confrontation between me and the respiratory therapist last night. Then, at 6am, another RT came in and the confrontation escalated. Finally, with the resident on call and all of the nursing staff supporting me, we had resolution an hour later. Mama bear was roaring this morning! Those who have encouraged me to have thicker skin and a stronger spine would be so proud!!
After waking during the morning events, Mason fell back asleep and ended up sleeping until about 10. We started the 2nd dose of the IV steroids at about 11 and his roaring started. No nap today, but lots of fussiness. The good news, though is that his oxygen need has come back down after an increase yesterday. He's breathing easier and saturating better. As time passes today, the roaring has decreased steadily and now he's just about back to normal -- well, as decreased as it's going to get in a 1.5 year old who hasn't had a nap.
2 of 3 days of steroids behind us; 1 more day, then a couple of days to monitor and we're home for another month. This one's been difficult, but we've learned a lot and they'll only get better!
After waking during the morning events, Mason fell back asleep and ended up sleeping until about 10. We started the 2nd dose of the IV steroids at about 11 and his roaring started. No nap today, but lots of fussiness. The good news, though is that his oxygen need has come back down after an increase yesterday. He's breathing easier and saturating better. As time passes today, the roaring has decreased steadily and now he's just about back to normal -- well, as decreased as it's going to get in a 1.5 year old who hasn't had a nap.
2 of 3 days of steroids behind us; 1 more day, then a couple of days to monitor and we're home for another month. This one's been difficult, but we've learned a lot and they'll only get better!
Saturday, December 12, 2009
Finally, We Got What We Came For!
First of all, Mason wants to make sure to say, HAPPY BIRTHDAY, PAPA!!!
"I don't care who does it - NICU, PICU, IV therapy, Panda, or anesthesia - I want the best person in the hospital to get up here and start an IV!" That's the fantastic quote from our fantastic attending pediatrician after still no IV at 9:45 this morning. I loved it! He made some phone calls, talked to the anesthesiologist, and we had a plan by about 10:15. The anesthesiologist was just getting started with a surgery, but once she made sure the airway was good, she could let her resident monitor things, step out, and get an IV started for Mason. So, that's just what we did, finally! So, about 23 hours after arriving, we finally got what we came for - Mason started his pulse dose of steroids.
Unfortunately, between the 'roid rage, the likely aching from being poked 8 times, the IV forcing his foot into an awkward position, and Mason's last tooth starting to cut through his gums, he didn't have a great afternoon. He needed quite a bit more oxygen most of the day, but is now starting to need a little less oxygen tonight. Now, if we could just get his night time medications and head to sleep, we could start the day fresh tomorrow.
"I don't care who does it - NICU, PICU, IV therapy, Panda, or anesthesia - I want the best person in the hospital to get up here and start an IV!" That's the fantastic quote from our fantastic attending pediatrician after still no IV at 9:45 this morning. I loved it! He made some phone calls, talked to the anesthesiologist, and we had a plan by about 10:15. The anesthesiologist was just getting started with a surgery, but once she made sure the airway was good, she could let her resident monitor things, step out, and get an IV started for Mason. So, that's just what we did, finally! So, about 23 hours after arriving, we finally got what we came for - Mason started his pulse dose of steroids.
Unfortunately, between the 'roid rage, the likely aching from being poked 8 times, the IV forcing his foot into an awkward position, and Mason's last tooth starting to cut through his gums, he didn't have a great afternoon. He needed quite a bit more oxygen most of the day, but is now starting to need a little less oxygen tonight. Now, if we could just get his night time medications and head to sleep, we could start the day fresh tomorrow.
Friday, December 11, 2009
Don't Worry, This One Was "Planned"
As "planned" we arrived back at the hospital today to start our 2nd round of Pulse Dose steroids. Unfortunately, plans never seem to go quite like they are supposed to whenever Mason is concerned. As I write this, an hour after Mason's regular bed time, we are still awaiting the team with advanced training to come and start an IV for Mason so that he can start his 2nd Pulse Dose of steroids. I should give some credit to the system, one of the members of the team that was on 6 hours ago did try, but after 3 attempts, she gave up and said she would send someone else from the team. So, 6 hours later, 9 hours after checking in, we are still waiting to start the steroids. Sure am glad we spent the day waiting.
On the positive side, we are back in the big room we left when we discharged 2 weeks ago. The nurses are wonderful and worked it out so that it was available for us a few hours after we arrived.
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I never posted the first part of the message and now I'm back writing at 10:45 pm. Another couple of people from the team showed up to try to start an IV and once again, unsuccessful after 3 tries. Very frustrating. Still no steroids. Now, they'll call anesthesia to see if they can start an IV. Hopefully, sometime before midnight, we can start the steroids. After all, it's what we came for nearly 10 hours ago.
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3rd update - 11:50 pm. No IV tonight. Won't start the steroids tonight. Anesthesia will come and try tomorrow. I'm awaiting a conversation with the doctor to make sure that we are 1st on anesthesia's list tomorrow so that we don't spend a 2nd day waiting. Very frustrating day.
By the way, today marks the 2nd anniversary of the day that Bill and I found out that I didn't have enough amniotic fluid and that our son may not survive to be born. It is amazing how much has happened in those 2 years. We have plenty of frustrating days like today, but are so blessed to be a part of his life. He is truly an amazing child with an infectious laugh, a fantastic smile, and the best disposition I've ever seen in a kid. I know, I'm biased, but I have proof. All of the nurses chomp at the bit to make sure everything is perfect for Mason when he comes to the hospital. They line up to work with him and all come by to say hi when we are here. We are so lucky!!
We love you, little dude!
On the positive side, we are back in the big room we left when we discharged 2 weeks ago. The nurses are wonderful and worked it out so that it was available for us a few hours after we arrived.
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I never posted the first part of the message and now I'm back writing at 10:45 pm. Another couple of people from the team showed up to try to start an IV and once again, unsuccessful after 3 tries. Very frustrating. Still no steroids. Now, they'll call anesthesia to see if they can start an IV. Hopefully, sometime before midnight, we can start the steroids. After all, it's what we came for nearly 10 hours ago.
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3rd update - 11:50 pm. No IV tonight. Won't start the steroids tonight. Anesthesia will come and try tomorrow. I'm awaiting a conversation with the doctor to make sure that we are 1st on anesthesia's list tomorrow so that we don't spend a 2nd day waiting. Very frustrating day.
By the way, today marks the 2nd anniversary of the day that Bill and I found out that I didn't have enough amniotic fluid and that our son may not survive to be born. It is amazing how much has happened in those 2 years. We have plenty of frustrating days like today, but are so blessed to be a part of his life. He is truly an amazing child with an infectious laugh, a fantastic smile, and the best disposition I've ever seen in a kid. I know, I'm biased, but I have proof. All of the nurses chomp at the bit to make sure everything is perfect for Mason when he comes to the hospital. They line up to work with him and all come by to say hi when we are here. We are so lucky!!
We love you, little dude!
Monday, December 7, 2009
In Search of the Perfect One
Thankfully, for the 2nd year in a row, Mason was home for a short time in early December, so we were able to go on our annual search for the perfect Christmas tree. We were blessed with beautiful, clear, really cold weather. We bundled ourselves up as much as possible including socks on Mason's hands -- guess we overlooked the need for mittens -- oops! Despite the cold, a good time was had by all and 2 perfect trees were found -- one for us and one for Staramama and Pomp-pomp. 
Mason's been doing pretty well since starting on the higher maintenance dose of steroids early last week. His breathing has eased quite a bit, he's not working nearly as hard to breathe, and he's generally much happier. We go in this Friday for our 2nd 3 day Pulse Dose of steroids (the 30 mg/kg/day). We are hopeful that after several of these, his maintenance dose of steroids will come down and his lungs will see some overall improvement. We are eagerly awaiting that day!
Mason's been doing pretty well since starting on the higher maintenance dose of steroids early last week. His breathing has eased quite a bit, he's not working nearly as hard to breathe, and he's generally much happier. We go in this Friday for our 2nd 3 day Pulse Dose of steroids (the 30 mg/kg/day). We are hopeful that after several of these, his maintenance dose of steroids will come down and his lungs will see some overall improvement. We are eagerly awaiting that day!
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