They ended their time like they usually do, reading a chapter from Curious George. This time, little George got in on the action too.
(The picture is so grainy because I took it with my computer as to not interrupt their time together. )
Friday, January 7, 2011
Back to School...
We're starting slow with school this week. Max chatted with his friends, and listened in on story time yesterday and today. And today, his teacher came to do a quick lesson on "I Am", and counting. When it was time for him to fill in the sentence "I am...", he said "done". HA! Oh well, we'll get back to a normal schedule soon.
They ended their time like they usually do, reading a chapter from Curious George. This time, little George got in on the action too.
(The picture is so grainy because I took it with my computer as to not interrupt their time together. )
They ended their time like they usually do, reading a chapter from Curious George. This time, little George got in on the action too.
(The picture is so grainy because I took it with my computer as to not interrupt their time together. )
Wednesday, January 5, 2011
Coordinated Care...
It's been a doozy of a week since we've been home. While it's been wonderful to be home, it hasn't been relaxing!
The schedule we've been on to give Max his antibiotics every 8 hours has been pretty tiring. I would stay up until almost 12:30am to give him his final dose, then we were up again at 6:00 am for his first dose. Pair that with round the clock tube feedings (which he's still working up to his regular schedule), and I've been pretty stinking tired! Catching up with housework after being gone for almost 3 weeks was a chore too. Then, Monday, we had to take Max into the ED at Children's because there was a site on his incision that looked infected. This was one of Steve most exciting visits, as he got to "assist" the surgeon in checking the incision for infection by holding Max while they lanced the scar area. Ick - Ick - Ick! I don't handle blood on most occasions, but blood on my baby and I'm a bowl of jelly. Luckily it was not infected, and Max didn't feel a thing, thanks to the magical emla cream. And I didn't pass out, but I did get a glimpse of what was going on and I couldn't shake the wobbly feeling for a while. ICK!
This morning we had to go in for his follow up CT Scan. They wanted to get a good look at his abdomen to see if the infection and enlarged intestines had cleared. We were down to the hospital by 7:00am, and back home by about 9:30am after the quick scan. While home, we let him rest a bit, and ate our lunch before heading back down to Children's for our follow-up appointment with his pediatrician. A last minute scheduling conflict let us get in to see her rather than the nurse practitioner he was scheduled to see tomorrow.
I want to stop here and talk a bit about how amazing our pediatrician's office is. Max goes to the Special Care Clinic at The Children's Hospital in Aurora, CO. All of the doctors in the clinic specialize in treating kids with complex medical needs. When we came in this afternoon, we didn't expect much more than a simple follow-up after his hospitalization, but we got a reminder of why we drive 30-45 minutes each way to see all of his doctors at Children's.
When his doctor came in, she brought with her a psychology student who was shadowing her. She especially wanted to introduce her to Max and to us. She wanted the student to see how although Max doesn't talk, he's very smart, and knows everything that is going on. She wanted to show her first, that you can't underestimate the child because of what their outward abilities may look like. And, she wanted to show her how Max interacted through the appointment.
Then she talked to us about coming in the Spring to talk to medical students, residents, physician assistants, physical therapist, and others about Max. We'll work on our "talk" to them, but again, she wants these new students to see that Max and so many other kids like him have so much more going on than at first glance.
Then we got down to business. We were chatting a bit while Max's IV's were finishing up. She checked the radiology report from earlier in the day. He was given a good report, and everything looked cleared up. She checked on his incision, and the new area the surgeon reopened earlier this week. She asked how his seizures were (still no seizures...holy camoly we still can't believe it...through this all!) and how he was sleeping. All with a good report.
At that point, the doctor had the nutritionist come in and talk about his food, and she left to order his labs and to talk to Infectious Disease about their recommendation about the antibiotics and the PICC line. We chatted with the nutritionist about his feedings, and about the new formula recipe we're using. She had been working closely with the Metabolic Clinic while we were inpatient to change his formula around to work with protein restriction for his metabolic disease.
Once we got all of the nutrition part sorted out, a resource nurse came in to pull the labs from his PICC line, rather than needing to go to the outpatient lab, and have him get poked. While she was drawing the labs, his doctor came in and said that Infectious Disease were pleased, and we could discontinue the antibiotics, and the nurse could pull the PICC line when she was done drawing the labs. Waaahoo!
The rest of the appointment was a breeze. We got the PICC line out, and chatted a few more minutes with his doc, since HOPEFULLY we won't see her again until Spring! But, I left there with such an appreciation for Children's, and all of his doctors being there and working so well together through the Special Care Clinic. In those couple of hours in the clinic today, we got sorted out with radiology, got blood draws, and the picc line removed, talked to his nutritionist, who is talking with metabolics. If we were still with our old pediatrician's office, each one of those things would have been a separate event, and different clinics. I'm really thankful we've got such a great solid base to coordinate all of his care.
I'm also glad to be getting ready to go to bed, and not having to stay awake until 12:30am to finish IV medicines! He will continue eating by the pump for a while longer, as the CT Scan did show his intestines are still not completely back to normal size, and we don't want to overload them with too much food at one time.
Hopefully it won't be another week before I update. But, who knows! I am still catching up on everything, and it seems the more I check off my list, the more I find needs to be done. I'm just thankful we're home, he's feeling much better, and he got such a good report today.
Now this sleepy momma is going to bed!
The schedule we've been on to give Max his antibiotics every 8 hours has been pretty tiring. I would stay up until almost 12:30am to give him his final dose, then we were up again at 6:00 am for his first dose. Pair that with round the clock tube feedings (which he's still working up to his regular schedule), and I've been pretty stinking tired! Catching up with housework after being gone for almost 3 weeks was a chore too. Then, Monday, we had to take Max into the ED at Children's because there was a site on his incision that looked infected. This was one of Steve most exciting visits, as he got to "assist" the surgeon in checking the incision for infection by holding Max while they lanced the scar area. Ick - Ick - Ick! I don't handle blood on most occasions, but blood on my baby and I'm a bowl of jelly. Luckily it was not infected, and Max didn't feel a thing, thanks to the magical emla cream. And I didn't pass out, but I did get a glimpse of what was going on and I couldn't shake the wobbly feeling for a while. ICK!
This morning we had to go in for his follow up CT Scan. They wanted to get a good look at his abdomen to see if the infection and enlarged intestines had cleared. We were down to the hospital by 7:00am, and back home by about 9:30am after the quick scan. While home, we let him rest a bit, and ate our lunch before heading back down to Children's for our follow-up appointment with his pediatrician. A last minute scheduling conflict let us get in to see her rather than the nurse practitioner he was scheduled to see tomorrow.
I want to stop here and talk a bit about how amazing our pediatrician's office is. Max goes to the Special Care Clinic at The Children's Hospital in Aurora, CO. All of the doctors in the clinic specialize in treating kids with complex medical needs. When we came in this afternoon, we didn't expect much more than a simple follow-up after his hospitalization, but we got a reminder of why we drive 30-45 minutes each way to see all of his doctors at Children's.
When his doctor came in, she brought with her a psychology student who was shadowing her. She especially wanted to introduce her to Max and to us. She wanted the student to see how although Max doesn't talk, he's very smart, and knows everything that is going on. She wanted to show her first, that you can't underestimate the child because of what their outward abilities may look like. And, she wanted to show her how Max interacted through the appointment.
Then she talked to us about coming in the Spring to talk to medical students, residents, physician assistants, physical therapist, and others about Max. We'll work on our "talk" to them, but again, she wants these new students to see that Max and so many other kids like him have so much more going on than at first glance.
Then we got down to business. We were chatting a bit while Max's IV's were finishing up. She checked the radiology report from earlier in the day. He was given a good report, and everything looked cleared up. She checked on his incision, and the new area the surgeon reopened earlier this week. She asked how his seizures were (still no seizures...holy camoly we still can't believe it...through this all!) and how he was sleeping. All with a good report.
At that point, the doctor had the nutritionist come in and talk about his food, and she left to order his labs and to talk to Infectious Disease about their recommendation about the antibiotics and the PICC line. We chatted with the nutritionist about his feedings, and about the new formula recipe we're using. She had been working closely with the Metabolic Clinic while we were inpatient to change his formula around to work with protein restriction for his metabolic disease.
Once we got all of the nutrition part sorted out, a resource nurse came in to pull the labs from his PICC line, rather than needing to go to the outpatient lab, and have him get poked. While she was drawing the labs, his doctor came in and said that Infectious Disease were pleased, and we could discontinue the antibiotics, and the nurse could pull the PICC line when she was done drawing the labs. Waaahoo!
The rest of the appointment was a breeze. We got the PICC line out, and chatted a few more minutes with his doc, since HOPEFULLY we won't see her again until Spring! But, I left there with such an appreciation for Children's, and all of his doctors being there and working so well together through the Special Care Clinic. In those couple of hours in the clinic today, we got sorted out with radiology, got blood draws, and the picc line removed, talked to his nutritionist, who is talking with metabolics. If we were still with our old pediatrician's office, each one of those things would have been a separate event, and different clinics. I'm really thankful we've got such a great solid base to coordinate all of his care.
I'm also glad to be getting ready to go to bed, and not having to stay awake until 12:30am to finish IV medicines! He will continue eating by the pump for a while longer, as the CT Scan did show his intestines are still not completely back to normal size, and we don't want to overload them with too much food at one time.
Hopefully it won't be another week before I update. But, who knows! I am still catching up on everything, and it seems the more I check off my list, the more I find needs to be done. I'm just thankful we're home, he's feeling much better, and he got such a good report today.
Now this sleepy momma is going to bed!
Friday, December 31, 2010
Reflections...
I've been trying all day to come up with some deep blog entry about the year 2010. But, in the end...we're still reeling from the past two weeks in the hospital. And, while we are home, and so very thankful for it, it isn't any easier being home...just more comfortable.
Now we have all of the home stuff to keep up with, the regular Max stuff, and added new Max stuff. It's 10:00pm on New Year's Eve, and we're watching the clock not for when to count down the minutes to the next year, but watching the time to know when to start, stop, and restart Max's IV medicines.
But, while waiting for that to happen, and guaranteeing that I'll be up until midnight to see that his medicines are all given, I thought I could try to get to that reflection bit of the year past.
When I looked into myself last year this time, and asked what I wanted to accomplish, it was clear that I needed to step out and try harder with friendships and family, and be braver with experiences. It's difficult to get to where our friends are sometimes, so we were so very fortunate to have so many friends come to us this year. This year we were visited by friends from Pennsylvania, Texas, California, England, and Michigan. Of course we had our "regulars" popping in throughout the year as well. I feel so lucky to have family and friends who understand that it is not the easiest to get to them, and still make the effort to come to us. Whether they live a couple miles away, or half a world away.
I also made a very special bond with a group of ladies we call the "super moms". It started just a few of us meeting at the cafe at Children's Hospital, and has turned unto a monthly dinner out, and an incredible support system for me. We have formed a group that is so important for all of us. And have found that it fills an empty spot we didn't know we had until we found each other.
For the bravery bit, I left Max and Steve for a week in another country...two other countries in fact. Steve and I made a decision that even though we aren't able to take Max to far off places right now, we should still go. We love to travel so much, and if we can't do it together, we shouldn't give it up altogether. So, for my birthday, I was able to go to Paris, France and London, England for a week total. I have never traveled by myself, save one trip to Tulsa from Colorado for a friend's wedding. It felt brave...and a little crazy. But, it was a trip of a lifetime. And gave me the encouragement to try it again.
Another bravery item was seeing Steve off for almost 3 weeks to India. I knew he would be fine, and I hoped we would. But, there was a lot of faith and hope that Max would stay healthy while he was gone. I was nervous, but really wanted to see if we could do it. I never like to think of what life might be like if Steve weren't around, but it's always comforting to know that I am capable to do things on my own, and ask for friend's help if I need to.
That brings me to another part of bravery...or stepping out...or basically asking for help. I do not like to ask for help. But, this year I have found myself time and time again swallowing my stubbornness or pride or whatever it is, and asking others for help. Max was in the hospital a lot this past year. We saw more hospitalizations this past year than he's ever had in a single year prior. I've had to take friends up on their offers to "call anytime if you need something"...including in the middle of the night, or first thing in the morning. I've accepted meals, and my house cleaned, and babysitting when I really didn't want to...but realized I needed to accept it. And my family has been there time and time again to fill in all the little pieces I forget to ask about. And that's a good thing...and I'm still trying to learn how to let people in to help. I guess I've realized I can't...we can't do this life on our own. And that's okay too.
So those are the things I set out to do this year that got done. I'm sure if you wanted an in depth of our past year, you could go through the month links on the side here to see what our year held. We laughed, and cried, met new people and said goodbye to some. All in all though, 2010 was a fine year. It definitely felt like a year of personal growth for both of us...and Max and Abbey too.
Now on to 2011...more adventures for the Watson's. More learning and growing, and lots of love and laughter.
Now we have all of the home stuff to keep up with, the regular Max stuff, and added new Max stuff. It's 10:00pm on New Year's Eve, and we're watching the clock not for when to count down the minutes to the next year, but watching the time to know when to start, stop, and restart Max's IV medicines.
But, while waiting for that to happen, and guaranteeing that I'll be up until midnight to see that his medicines are all given, I thought I could try to get to that reflection bit of the year past.
When I looked into myself last year this time, and asked what I wanted to accomplish, it was clear that I needed to step out and try harder with friendships and family, and be braver with experiences. It's difficult to get to where our friends are sometimes, so we were so very fortunate to have so many friends come to us this year. This year we were visited by friends from Pennsylvania, Texas, California, England, and Michigan. Of course we had our "regulars" popping in throughout the year as well. I feel so lucky to have family and friends who understand that it is not the easiest to get to them, and still make the effort to come to us. Whether they live a couple miles away, or half a world away.
I also made a very special bond with a group of ladies we call the "super moms". It started just a few of us meeting at the cafe at Children's Hospital, and has turned unto a monthly dinner out, and an incredible support system for me. We have formed a group that is so important for all of us. And have found that it fills an empty spot we didn't know we had until we found each other.
For the bravery bit, I left Max and Steve for a week in another country...two other countries in fact. Steve and I made a decision that even though we aren't able to take Max to far off places right now, we should still go. We love to travel so much, and if we can't do it together, we shouldn't give it up altogether. So, for my birthday, I was able to go to Paris, France and London, England for a week total. I have never traveled by myself, save one trip to Tulsa from Colorado for a friend's wedding. It felt brave...and a little crazy. But, it was a trip of a lifetime. And gave me the encouragement to try it again.
Another bravery item was seeing Steve off for almost 3 weeks to India. I knew he would be fine, and I hoped we would. But, there was a lot of faith and hope that Max would stay healthy while he was gone. I was nervous, but really wanted to see if we could do it. I never like to think of what life might be like if Steve weren't around, but it's always comforting to know that I am capable to do things on my own, and ask for friend's help if I need to.
That brings me to another part of bravery...or stepping out...or basically asking for help. I do not like to ask for help. But, this year I have found myself time and time again swallowing my stubbornness or pride or whatever it is, and asking others for help. Max was in the hospital a lot this past year. We saw more hospitalizations this past year than he's ever had in a single year prior. I've had to take friends up on their offers to "call anytime if you need something"...including in the middle of the night, or first thing in the morning. I've accepted meals, and my house cleaned, and babysitting when I really didn't want to...but realized I needed to accept it. And my family has been there time and time again to fill in all the little pieces I forget to ask about. And that's a good thing...and I'm still trying to learn how to let people in to help. I guess I've realized I can't...we can't do this life on our own. And that's okay too.
So those are the things I set out to do this year that got done. I'm sure if you wanted an in depth of our past year, you could go through the month links on the side here to see what our year held. We laughed, and cried, met new people and said goodbye to some. All in all though, 2010 was a fine year. It definitely felt like a year of personal growth for both of us...and Max and Abbey too.
Now on to 2011...more adventures for the Watson's. More learning and growing, and lots of love and laughter.
Wednesday, December 29, 2010
Home!!! Home!!! Home!!!
After 16 days, 30 hours of uncontrolled vomiting, a hugely distended stomach, one emergency operation, an infection that followed, 2 CT scans, Christmas on the 8th floor of Children's Hospital, a central line, and a picc line, we are FINALLY home.
(Balloons from one of Max's classmates who has written to check on him almost every day!)
They were going to discharge us today, but Steve asked if we could go home yesterday instead. It gave us a full evening and a day with Abbey at home before she had to go back to her mother's. It was great to all be together for at least one night before she had to go back.
We got home and got to work on picking up the mess that was our living space. When you're in for long stays, coming home and dropping off dirty clothes, and picking up clean ones gets a little hectic. Mail unopened and opened is all over the place. A few dirty dishes, and piles and piles and piles of laundry met us. Add on top of that the bags of things we brought home with Max, and it was a bit crazy.
But, we had to make way for more stuff. The home health company was to bring his IV antibiotics, and all of the supplies, along with meeting his nurse who would oversee the initial administering of the drugs, and come back periodically while he's on IV antibiotics at home.
(This is SOME of the stuff dropped off last night.)
Abbey just wanted Indian food. Nearly 2 weeks here, and a whole lot of eating out, I think we were all ready for some home cooked food. And as it turned out, I ALWAYS have the makings of curry, so she lucked out. I threw dinner together in about 30 minutes, and we ate it up before the nurse came.
Once the nurse got here, we went over tons of papers and then gave him his meds. We learned how to flush the IV and do a heperin lock while we were in the hospital, but we didn't know what kind of pump we would be using. We didn't get a pump at all, we got these neat little gadgets that once the clasp is undone, the balloon inside holding the medicine starts to deflate and the medicine travels through the tubing into his picc line. So low-tech, and so cool!
We still have him on continuous tube feeding, which is not his normal, but we are trying to get him used to eating after almost two weeks of IV fluids. So, working slowly to get back to what he's used to. He's doing well with it, but the continuous feeding gives him so many bubbles in his gut, so we have to vent him a lot more than usual.
Max is still not 100%, but he's feeling better. The past 2 days he's stayed awake for most of the day, and today has sat up in a chair for most of the day. He's still pale, and not as strong as he was before he got sick. But, he's back to talking with us, and he had fun playing with some of his new Christmas presents he got to open once we got home. His big gift definitely did not disappoint. He sat with Daddy and Abbey and played for 30 minutes on his new drum.
Steve's at the airport with Abbey now, and we'll spend the rest of the week getting back to normal here, and ringing in the new year at home. We have several follow up appointments next week, and hopefully will be able to discontinue to antibiotics after the CT scan next Wednesday.
Now it's time to hold my giant guy, because he's not so sure about this staying awake all day gig. And, now that we can hold on to each other again without so many tubes and wires, we're taking full advantage of it.
(Balloons from one of Max's classmates who has written to check on him almost every day!)
They were going to discharge us today, but Steve asked if we could go home yesterday instead. It gave us a full evening and a day with Abbey at home before she had to go back to her mother's. It was great to all be together for at least one night before she had to go back.
We got home and got to work on picking up the mess that was our living space. When you're in for long stays, coming home and dropping off dirty clothes, and picking up clean ones gets a little hectic. Mail unopened and opened is all over the place. A few dirty dishes, and piles and piles and piles of laundry met us. Add on top of that the bags of things we brought home with Max, and it was a bit crazy.
But, we had to make way for more stuff. The home health company was to bring his IV antibiotics, and all of the supplies, along with meeting his nurse who would oversee the initial administering of the drugs, and come back periodically while he's on IV antibiotics at home.
(This is SOME of the stuff dropped off last night.)
Abbey just wanted Indian food. Nearly 2 weeks here, and a whole lot of eating out, I think we were all ready for some home cooked food. And as it turned out, I ALWAYS have the makings of curry, so she lucked out. I threw dinner together in about 30 minutes, and we ate it up before the nurse came.
Once the nurse got here, we went over tons of papers and then gave him his meds. We learned how to flush the IV and do a heperin lock while we were in the hospital, but we didn't know what kind of pump we would be using. We didn't get a pump at all, we got these neat little gadgets that once the clasp is undone, the balloon inside holding the medicine starts to deflate and the medicine travels through the tubing into his picc line. So low-tech, and so cool!
We still have him on continuous tube feeding, which is not his normal, but we are trying to get him used to eating after almost two weeks of IV fluids. So, working slowly to get back to what he's used to. He's doing well with it, but the continuous feeding gives him so many bubbles in his gut, so we have to vent him a lot more than usual.
Max is still not 100%, but he's feeling better. The past 2 days he's stayed awake for most of the day, and today has sat up in a chair for most of the day. He's still pale, and not as strong as he was before he got sick. But, he's back to talking with us, and he had fun playing with some of his new Christmas presents he got to open once we got home. His big gift definitely did not disappoint. He sat with Daddy and Abbey and played for 30 minutes on his new drum.
Steve's at the airport with Abbey now, and we'll spend the rest of the week getting back to normal here, and ringing in the new year at home. We have several follow up appointments next week, and hopefully will be able to discontinue to antibiotics after the CT scan next Wednesday.
Now it's time to hold my giant guy, because he's not so sure about this staying awake all day gig. And, now that we can hold on to each other again without so many tubes and wires, we're taking full advantage of it.
Saturday, December 25, 2010
Happy Christmas...
When we started out 13 days ago, my biggest wish was that Max would get healthy, and we wouldn't be spending Christmas in the hospital. But, I knew early on that's exactly where we would be. Up until a few days ago, we held our breath just a little bit that we would be home, but once we got word that he had an infection, we knew we were here through the holiday.
But, as terrible as I had imagined in my head, this was actually a beautiful Christmas. We were all together, Max was in such a great mood, and feeling well. We opened presents, and ate together. The only thing different was location. (And visiting with doctors and nurses all day.) But, it was a very good day, and now it's past us and I don't have to worry anymore if we will be spending Christmas in the hospital. It wasn't terrible...and sometimes that's enough to get you through.
When we got up to the hospital, Max was wide awake and cheery! We all ate a little breakfast together, and then got to the part Abbey was most excited for...PRESENTS!
And Max had a turn with a few of his gifts too. I didn't bring all of his up here, because they are big and he wouldn't get to play with them until he's feeling better anyway. So, Abbey helped him with the few we did have up here.
George, we got so much YELLOW!!!
After a good time with mom, and having Christmas dinner brought up by one of my supermoms, Susan came up to sit with Max while we had some alone time with Abbey. It's been difficult trying to give her due attention in the hospital. So, it was great to get to focus on her for a while and know that Max was taken care of.
And he got a transformer robot speaker, that is YELLOW! And sings opera...or reads Dr. Seuss...or whatever else the iPad is playing. :)
Merry Happy Christmas from Monster Max to you. Here's hoping for a Happy New Year spent at home!
But, as terrible as I had imagined in my head, this was actually a beautiful Christmas. We were all together, Max was in such a great mood, and feeling well. We opened presents, and ate together. The only thing different was location. (And visiting with doctors and nurses all day.) But, it was a very good day, and now it's past us and I don't have to worry anymore if we will be spending Christmas in the hospital. It wasn't terrible...and sometimes that's enough to get you through.
When we got up to the hospital, Max was wide awake and cheery! We all ate a little breakfast together, and then got to the part Abbey was most excited for...PRESENTS!
And Max had a turn with a few of his gifts too. I didn't bring all of his up here, because they are big and he wouldn't get to play with them until he's feeling better anyway. So, Abbey helped him with the few we did have up here.
George, we got so much YELLOW!!!
After a good time with mom, and having Christmas dinner brought up by one of my supermoms, Susan came up to sit with Max while we had some alone time with Abbey. It's been difficult trying to give her due attention in the hospital. So, it was great to get to focus on her for a while and know that Max was taken care of.
And he got a transformer robot speaker, that is YELLOW! And sings opera...or reads Dr. Seuss...or whatever else the iPad is playing. :)
Merry Happy Christmas from Monster Max to you. Here's hoping for a Happy New Year spent at home!
Thursday, December 23, 2010
I should know better!
I should know better than to write about how good Max is doing...because after I finished my last post, things went from looking up to going downhill fast.
The Keppra increase made him very jerky and twitchy, which it can, but something we hadn't seen before was this labored breathing and very high heart rate along with it. He was dripping sweat, and would get fevers. By evening, we were giving him his maximum dose of Ativan to just knock him out and try to stop the jerking around.
It worked immediately, but the respirations and heart rate stayed elevated. And while we started feeding him little bits, he continued through the night with high respirations.
It was Steve's night to stay home with Abbey, so I was gearing up to stay up all night watching Max since he was acting so differently with the breathing. When in walked one of our favorite nurses. Not only is she a great nurse, but I felt a special connection the other day when she came by. She was also one of sweet Samantha's nurses, and I knew how well she took care of her also. So, when she came in and remembered Max right away, I got this feeling that Samantha is still around here, looking out for her buddies, making sure they get all the best care she got. And it made me feel so much at ease.
And she did take great care of Max and us. When his lab results came back with elevated infection markers, they started him on 2 antibiotics, but as the night and day progressed, he became more labored with breathing, and just looked more sick.
Pretty soon, we had a plan to stop his feedings, and to start running cultures and more tests, as well as continuing on with the antibiotics. By afternoon, we were back down for a CT scan to see if there was another blockage, or abscess where he had surgery. And, by evening we had met with infectious disease who had added on two more antibiotics, and an antifungal to cover everything that might be going on.
We got the diagnosis of peritonitis, which is an inflammation (irritation) of the peritoneum, the tissue that lines the wall of the abdomen and covers the abdominal organs. It can't be spcifically diagnosed from the CT scan, but there was enough evidence from the images that they were able to call it that. So, by last night, he was on 5 medicines through his IV, and resting well.
His respirations and heart rate have come down dramatically, and he slept through the night. All of his cultures are still negative, and he'll continue on the medicines for at least another day. Then the tricky job of deciding which ones to keep him on...for the next few weeks!!!! IV antibiotics for about 3 weeks. I just blinked and looked a little dumbfounded when the doctor told us that this morning! But, there are a lot of nasty things in the gut, and they are treating as if his gut has perforated to make sure he doesn't get the bacteria in his system.
We'll start feeding him tomorrow, on continuous feedings to give his gut and intestines time to process it. And we will definitely be seeing Santa at the Children's Hospital this year. Abbey's a little bummed about that, but she's just happy to be here with all of us. She and I are going to go to a movie this afternoon, which will be a nice break.
Now for a couple of videos. The first one is of how hard he was breathing yesterday. His saturation levels were always in the 90% range for oxygen, he was just having more pressure on his diaphragm and lungs with the inflammation that it was making it hard for him to breathe.
This one is today, just 24 hours after the antibiotics. He's waking about every hour and smiling and talking to us. He's still very tired, but he is just one week post-op, and been fighting a pretty wicked infection. But, I melt a thousand times over every time this boy laughs. Especially after these past 11 days.
The Keppra increase made him very jerky and twitchy, which it can, but something we hadn't seen before was this labored breathing and very high heart rate along with it. He was dripping sweat, and would get fevers. By evening, we were giving him his maximum dose of Ativan to just knock him out and try to stop the jerking around.
It worked immediately, but the respirations and heart rate stayed elevated. And while we started feeding him little bits, he continued through the night with high respirations.
It was Steve's night to stay home with Abbey, so I was gearing up to stay up all night watching Max since he was acting so differently with the breathing. When in walked one of our favorite nurses. Not only is she a great nurse, but I felt a special connection the other day when she came by. She was also one of sweet Samantha's nurses, and I knew how well she took care of her also. So, when she came in and remembered Max right away, I got this feeling that Samantha is still around here, looking out for her buddies, making sure they get all the best care she got. And it made me feel so much at ease.
And she did take great care of Max and us. When his lab results came back with elevated infection markers, they started him on 2 antibiotics, but as the night and day progressed, he became more labored with breathing, and just looked more sick.
Pretty soon, we had a plan to stop his feedings, and to start running cultures and more tests, as well as continuing on with the antibiotics. By afternoon, we were back down for a CT scan to see if there was another blockage, or abscess where he had surgery. And, by evening we had met with infectious disease who had added on two more antibiotics, and an antifungal to cover everything that might be going on.
We got the diagnosis of peritonitis, which is an inflammation (irritation) of the peritoneum, the tissue that lines the wall of the abdomen and covers the abdominal organs. It can't be spcifically diagnosed from the CT scan, but there was enough evidence from the images that they were able to call it that. So, by last night, he was on 5 medicines through his IV, and resting well.
His respirations and heart rate have come down dramatically, and he slept through the night. All of his cultures are still negative, and he'll continue on the medicines for at least another day. Then the tricky job of deciding which ones to keep him on...for the next few weeks!!!! IV antibiotics for about 3 weeks. I just blinked and looked a little dumbfounded when the doctor told us that this morning! But, there are a lot of nasty things in the gut, and they are treating as if his gut has perforated to make sure he doesn't get the bacteria in his system.
We'll start feeding him tomorrow, on continuous feedings to give his gut and intestines time to process it. And we will definitely be seeing Santa at the Children's Hospital this year. Abbey's a little bummed about that, but she's just happy to be here with all of us. She and I are going to go to a movie this afternoon, which will be a nice break.
Now for a couple of videos. The first one is of how hard he was breathing yesterday. His saturation levels were always in the 90% range for oxygen, he was just having more pressure on his diaphragm and lungs with the inflammation that it was making it hard for him to breathe.
This one is today, just 24 hours after the antibiotics. He's waking about every hour and smiling and talking to us. He's still very tired, but he is just one week post-op, and been fighting a pretty wicked infection. But, I melt a thousand times over every time this boy laughs. Especially after these past 11 days.
Tuesday, December 21, 2010
Quiet Yesterday...
I purposefully tried to not write updates yesterday.
While I know there are so many friends and family eager to hear what is going on minute by minute, sometimes we just need to step away from the computer and let Max do his recovery without reporting it step by step. Also, I had slept 2 hours the night prior and I felt a little on the grumpy side, and no one wants to see/gear that.
Yesterday he had a really great day. He slept SO much! His heart rate went from the 150's down to 110's once Abbey got up here. She got in Sunday night, and thankfully we are able to have her up here with us. He slept the day away, had great bowel movements, which is so important since having surgery on his intestines.
We got him sitting up in his bed, and towards the evening started very slowly giving him pediatlite to see if his stomach could handle it.
I ended going home last night, for the first time in a week. I would rather be at the hospital with Max, than an empty house without him. But, we've been up here so long, that it was high time I got home and saw how things were there. I got in bed about 10:00, and was out within minutes. I woke up at about 5:30 surprised at where I was, and that Max wasn't nearby. But, got back to sleep and slept for a couple more hours.
I got Abbey up and around and we headed back to the hospital this morning. Steve got more rest, and Max rested too, which we were worried he would after sleeping all day long!
Today, he got an increased dose on his seizure medicine, Keppra, because he has not been able to take his oral seizure medicine in a week. His neurologist wanted to make sure he's covered with a little extra Keppra, to make sure he has time to get back to a therapeutic level on the Vigabatrin.
That has caused him to be super jittery and twitchy today. So, we're having to inform anyone who walks in to do their part of treatment that this is what happens when Max gets an increase in Keppra, so they don't think it's seizures. He's been awake all day, but is feeling worn out from moving non-stop.
Last night before Abbey and I left to go home, I was given an invitation to the "Snow Pile" today. It's an event that allows parents of kids in the hospital the week of Christmas to go "shopping" for their kids. A volunteer came to get me at about 11:00, and walked me to a large conference room that looked like Santa's Workshop. Piles...and piles and PILES of toys lined the walls and the middle of the conference room.
Another volunteer helped me shop, letting me know what out of each pile I was to take. 3 large toys, an art toy, a book, a blanket, a stuffed animal, a beach towel with R2D2 (the only yellow thing I could find), a game and a puzzle. Abbey got a game, a book, and a stuffed animal. Then we walked over to another area on the way out, where they gave me a bag full of wrapping paper and ribbons. It was so helpful to have a few things for his Christmas, without having to worry about getting out and shopping for him!
There has been no talk at all about when we might get home. So, we're starting to have a back up plan in case we are here for Christmas...which is definitely a possibility. The rooms are emptying every day, so there are very few kids left in our hallway. They may move us in the next day or two to make sure the kids that are here will be near each other so the nurses aren't running up and down the hall. We'll try to get a sleep room Christmas Eve if we're here, so we can all wake up Christmas morning together. And, we'll open gifts here.
But, we're hoping we won't have to do any of that! And will get to wake up in our own beds Christmas morning!
We are waiting to see his metabolic doctor soon to see about starting his food back up. They have seen some promising level changes in his levels that point them to trying a lower protein diet. Since we are already in the hospital, and they can take levels to test if the new diet is working, we may start that here. But, if not, it may be something we start when we get home.
Once we know what diet he will be on, he will start eating again. Then we'll see how things progress.
I guess that's the bulk of the update today. I will check in within the next couple of days with more updates as things keep moving forward. Thank you for your continued thoughts, prayers, and encouragements through this whole stay.
While I know there are so many friends and family eager to hear what is going on minute by minute, sometimes we just need to step away from the computer and let Max do his recovery without reporting it step by step. Also, I had slept 2 hours the night prior and I felt a little on the grumpy side, and no one wants to see/gear that.
Yesterday he had a really great day. He slept SO much! His heart rate went from the 150's down to 110's once Abbey got up here. She got in Sunday night, and thankfully we are able to have her up here with us. He slept the day away, had great bowel movements, which is so important since having surgery on his intestines.
We got him sitting up in his bed, and towards the evening started very slowly giving him pediatlite to see if his stomach could handle it.
I ended going home last night, for the first time in a week. I would rather be at the hospital with Max, than an empty house without him. But, we've been up here so long, that it was high time I got home and saw how things were there. I got in bed about 10:00, and was out within minutes. I woke up at about 5:30 surprised at where I was, and that Max wasn't nearby. But, got back to sleep and slept for a couple more hours.
I got Abbey up and around and we headed back to the hospital this morning. Steve got more rest, and Max rested too, which we were worried he would after sleeping all day long!
Today, he got an increased dose on his seizure medicine, Keppra, because he has not been able to take his oral seizure medicine in a week. His neurologist wanted to make sure he's covered with a little extra Keppra, to make sure he has time to get back to a therapeutic level on the Vigabatrin.
That has caused him to be super jittery and twitchy today. So, we're having to inform anyone who walks in to do their part of treatment that this is what happens when Max gets an increase in Keppra, so they don't think it's seizures. He's been awake all day, but is feeling worn out from moving non-stop.
Last night before Abbey and I left to go home, I was given an invitation to the "Snow Pile" today. It's an event that allows parents of kids in the hospital the week of Christmas to go "shopping" for their kids. A volunteer came to get me at about 11:00, and walked me to a large conference room that looked like Santa's Workshop. Piles...and piles and PILES of toys lined the walls and the middle of the conference room.
Another volunteer helped me shop, letting me know what out of each pile I was to take. 3 large toys, an art toy, a book, a blanket, a stuffed animal, a beach towel with R2D2 (the only yellow thing I could find), a game and a puzzle. Abbey got a game, a book, and a stuffed animal. Then we walked over to another area on the way out, where they gave me a bag full of wrapping paper and ribbons. It was so helpful to have a few things for his Christmas, without having to worry about getting out and shopping for him!
There has been no talk at all about when we might get home. So, we're starting to have a back up plan in case we are here for Christmas...which is definitely a possibility. The rooms are emptying every day, so there are very few kids left in our hallway. They may move us in the next day or two to make sure the kids that are here will be near each other so the nurses aren't running up and down the hall. We'll try to get a sleep room Christmas Eve if we're here, so we can all wake up Christmas morning together. And, we'll open gifts here.
But, we're hoping we won't have to do any of that! And will get to wake up in our own beds Christmas morning!
We are waiting to see his metabolic doctor soon to see about starting his food back up. They have seen some promising level changes in his levels that point them to trying a lower protein diet. Since we are already in the hospital, and they can take levels to test if the new diet is working, we may start that here. But, if not, it may be something we start when we get home.
Once we know what diet he will be on, he will start eating again. Then we'll see how things progress.
I guess that's the bulk of the update today. I will check in within the next couple of days with more updates as things keep moving forward. Thank you for your continued thoughts, prayers, and encouragements through this whole stay.
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