Bad, bad blogger! I have gotten busy in life and neglected the retelling of my life. There is absolutely NO way to catch up so highlights only will have to do.
Let's see ... June 8-18 we were in Colorado with family on vacation. You recall how we entered Denver (Manny's 7 blood sugar) and then trip to the ER via ambulance with police escort. Then a couple of days of hallucinations but otherwise fine. The rest of us were in a bit of shell shock. We then did the touristy things and had a blast. My last post about Denver was from Breckenridge. Dan had fallen down the mountain and hurt his knee. The rest was just plain fun. (That's all recap.)
All was going well with us doing parks and walks around town. Then Manny got a high fever out of the clear blue. 100.4 is the criteria for us to go to the hospital and start treatment at home. But what about vacation? I waited until he was almost 103 before I started to think that I should go. What helped push me over the edge was his breathing became labored and his pulse ox started to drop. We expected a lower number at such a high altitude but he'd been maintaining at about 92 and now he was hitting low 80's. He just looked sick.
So we all drove to the ER. They dropped me off and went on a mine tour. They say it was one of the best things of the trip! I'm glad they got to go as I wasn't going to go anyway as it's not wheelchair accessible and I cannot carry Manny that long and Dan's knee was still too messed up to hold him either.
Meanwhile at the ER, I was at "home". Manny and I knew immediately what to do and how to handle the situation. I was again impressed that the Doctor listened to me and didn't over read the situation. They did the standard tests. CBC, blood cultures, chest xray, urine collection, etc. They got the initial blood labs from his central line but they couldn't get the peripheral for the blood culture. They decided to wait for the CBC to see if it was necessary or not. Sure enough, his normal WBC is 7 and it was 17.5 so they had to do the peripheral. Thankfully a nurse was there for a few minutes from their life flight (helicopter) and she was able to get the blood draw.
One silly thing is ... they gave Manny a teddy bear (very sweet) and he screamed! He didn't want it. I have no clue why but he objected firmly!!
Meanwhile, my brother in law is a doctor of radiology at that hospital and he was actually working until 4pm. He read Manny's chest xray (normal) and then hung out with us until discharge. I appreciated spending that time with him.
Eventually, they gave Manny an IV antibiotic and scripts for several things just in case. By the next day, Manny was feeling better. Thankfully we were headed back to Denver (a lower elevation) so he could recover. We never did know exactly what this illness was but the antibiotics and antifungals helped.
On the last day of vacation, we saw dozens of elk! They were right there in the backyard of my sister/brother in law. Manny and I actually sat and watched them for an hour or so from the deck. So serene. They didn't even budge! They just let us watch them.
The last night we sat out on the deck under the stars in the perfect temperature. Even saw the most amazing shooting star.
The flight home was uneventful! It was Southwest's birthday so we even got free adult beverages. :)
...
Home for a week and a half. During that time we did laundry, groceries, normal life things and trips to Busch Gardens and other fun places. Then we got ready for the family reunion.
...
Family reunion: Dan, his parents, 3 sisters, their spouses and kids get together every year for about a week. It's a blast. 10 adults, 10 kids this year. Kids ages 1-14. We rented a lakehouse and a pontoon boat and just hung out. We all take turns cooking dinner. We do events for the kids. We stay up way too late playing games and talking. We leave exhausted. But it's fun!
Thankful to report that Manny didn't get sick or have any issues at all.
I have pictures galore but just not the time to upload them. So use your imagination! :)
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In other news, Manny had a birthday, Zoe had her party and Jacob turned 14. I have tons of pictures from those events too. Maybe someday I can catch up on photo posts. (Not likely but a girl can dream, can't she?)
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Upcoming: Manny is rescheduled to go to Boston Children's Hospital for motility evaluation on August 7-10. Then to the NIH in Bethesda to the Neurogenetics Lab on September 5-6 (they specialize in the Muscular Dystrophy that Manny has and are interested in him due to the abnormal presentation of GI issues that he has.) Hoping between these two specialists, we can get some answers about his condition and treatment.
Jul 22, 2012
Jul 4, 2012
New Allergy
Our adventures continue. (Like you're surprised.)
So after we got home last Tuesday (June 26) after being discharged, we had an uneventful night.
The next day was a wonderful MDA event. Manny is too young to attend summer camp (must be 6) but we were invited for the day. All 6 kids went and we had a blast.
Manny was quite the hit. (He is everywhere.) And Daisy was too. The kids there liked her for the same reasons WE like her. Many of these kids have not been able to hold a dog before because they're too big ... but she is tiny enough for most of them to hold her. She is patient and kind and willing.
When we got in the van, I noticed Manny itching vigorously at the dressing/bandage for his broviac. Oh no. What did I see? THIS:
Yes, it's a rash. I immediately changed the bandages and cleaned the area thoroughly. What happened? I use certain products. They used 2 different ones. I will sort through which it was later. For now, I just needed it off his skin. (And for the record, these were things he's had in the past and had no troubles. We have just stopped using them. So now we know more allergies.)
This is what it looked like the next morning ... even though he was no longer being exposed to the allergen. (This was all over his chest.)
And by the next day, his skin was seeping. Remember that from before? He lost a PICC line from this issue. This time is different though as we knew immediately what was causing the problem and stopped exposing him to it (versus last time when he was still getting exposed to it). So I had hope that we wouldn't lose this line. Meanwhile, last time, we did the watchful waiting method. This time, I was super aggressive and got ahead of it immediately.
By the next day, this is what his skin looked like. So while not all better, it's still much improved.
Phew!
As I write this, it's almost a week later and he is ALMOST back to normal skin! Praise God!
So phew! That was close.
Wait, not so fast. Last night (Sunday), he got a fever. How high? High enough that I should have taken him in to the ER for blood tests and cultures. And likely an admission.
But ... I didn't go. Why? hmmm. Besides the obvious of I don't wanna??
Here's my rationale: Last Tuesday he got blood cultures and tests. They were all normal. So the odds of having an infection 5 days later is remote. And if it is an infection, it will be on the mild side since it has only had the 5 days or less to grow. Finally, if it is an infection, his fever will continue and he will stay/be sick. I monitor him all day and night long (even up to every 2 hours overnight). Finally, we had our weekly blood test first thing Monday morning at home. I will know the results of that by Tuesday morning.
So ... I feel safe that we are likely just dealing with another fluke of a fever (like we got in Denver ... oh, wait, I haven't told that story yet.) I've heard that kids with mitochondrial disorders (like Manny is suspected to have) often have unexplained fevers. If that is his new normal ... to have periodic unexplained fevers, I will either have to spend a lot of unnecessary time in the hospital for every fever OR have to learn how to differentiate them.
So now it's Monday afternoon and I'm waiting to see what his fever does. He's hanging right around that "go to the ER" number. Hovering near it. I plan to wait until the blood tests results tomorrow ... unless he takes a turn for the worse earlier of course.
And is that all that is going on? Of course not! Remember back in January where I had to get a bone graft for a tooth? Well, today we were checking to see if it is ready for the implant yet. I thought it was going to be a simple, quick talking only visit. But silly me ... I mentioned a problem.
Remember back in May (when Manny was in the hospital with the flu and needing a blood transfusion), I felt like I lost a filling on my back lower tooth. No biggie I thought. The only problem was that the jagged edges were cutting my tongue. I eventually got used to it and that was that. I figured it would be an easy stick the filling back in at the same time as the implant (scheduled for end of July). So imagine my shock when he said that the filling was actually still there and it was a "sink hole". The whole tooth collapsed in on itself. The nerve was exposed and there was major major decay. He couldn't believe I wasn't screaming in pain. And the infection in it was certainly causing my heart some complications. Great! So I figured today was as good as any day to do it.
Oh, and the only interesting thing was ... he kept having to give more anesthesia as he couldn't find the nerve for that tooth. He stuck me like 20 times and finally just did a block at the whole nerve root way up in my upper lip. I have holes everywhere. And even that didn't work completely and he had to do one right into the tooth itself. And still I could feel it, not just pressure but pain. Yikes! He kept saying I have unusual anatomy! I told him I wasn't surprised that I am "different" ... I am in every area of life, so why not this? LOL
But it certainly explains why the bone graft dry socket was such a problem back in February. The alternate dentist didn't even CHECK to see if I was numb when he went to repair it. He just assumed and went in. I told him it hurt like heck and he didn't believe me. Yowzers! Now I know why that hurt so much!!
So I sit here with vicodin on board and it's barely taking the edge off the pain. (And I'm one who doesn't even do tylenol etc. typically).
Finally, cute Manny story ... All the kids and went to a restaurant and ordered food. Manny ordered a "Chicken Mouse". LOL
I guess to a child that doesn't eat and never has eaten, that food makes as much sense as any other!
So after we got home last Tuesday (June 26) after being discharged, we had an uneventful night.
The next day was a wonderful MDA event. Manny is too young to attend summer camp (must be 6) but we were invited for the day. All 6 kids went and we had a blast.
Manny was quite the hit. (He is everywhere.) And Daisy was too. The kids there liked her for the same reasons WE like her. Many of these kids have not been able to hold a dog before because they're too big ... but she is tiny enough for most of them to hold her. She is patient and kind and willing.
When we got in the van, I noticed Manny itching vigorously at the dressing/bandage for his broviac. Oh no. What did I see? THIS:
Yes, it's a rash. I immediately changed the bandages and cleaned the area thoroughly. What happened? I use certain products. They used 2 different ones. I will sort through which it was later. For now, I just needed it off his skin. (And for the record, these were things he's had in the past and had no troubles. We have just stopped using them. So now we know more allergies.)
This is what it looked like the next morning ... even though he was no longer being exposed to the allergen. (This was all over his chest.)
And by the next day, his skin was seeping. Remember that from before? He lost a PICC line from this issue. This time is different though as we knew immediately what was causing the problem and stopped exposing him to it (versus last time when he was still getting exposed to it). So I had hope that we wouldn't lose this line. Meanwhile, last time, we did the watchful waiting method. This time, I was super aggressive and got ahead of it immediately.
By the next day, this is what his skin looked like. So while not all better, it's still much improved.
Phew!
As I write this, it's almost a week later and he is ALMOST back to normal skin! Praise God!
So phew! That was close.
Wait, not so fast. Last night (Sunday), he got a fever. How high? High enough that I should have taken him in to the ER for blood tests and cultures. And likely an admission.
But ... I didn't go. Why? hmmm. Besides the obvious of I don't wanna??
Here's my rationale: Last Tuesday he got blood cultures and tests. They were all normal. So the odds of having an infection 5 days later is remote. And if it is an infection, it will be on the mild side since it has only had the 5 days or less to grow. Finally, if it is an infection, his fever will continue and he will stay/be sick. I monitor him all day and night long (even up to every 2 hours overnight). Finally, we had our weekly blood test first thing Monday morning at home. I will know the results of that by Tuesday morning.
So ... I feel safe that we are likely just dealing with another fluke of a fever (like we got in Denver ... oh, wait, I haven't told that story yet.) I've heard that kids with mitochondrial disorders (like Manny is suspected to have) often have unexplained fevers. If that is his new normal ... to have periodic unexplained fevers, I will either have to spend a lot of unnecessary time in the hospital for every fever OR have to learn how to differentiate them.
So now it's Monday afternoon and I'm waiting to see what his fever does. He's hanging right around that "go to the ER" number. Hovering near it. I plan to wait until the blood tests results tomorrow ... unless he takes a turn for the worse earlier of course.
And is that all that is going on? Of course not! Remember back in January where I had to get a bone graft for a tooth? Well, today we were checking to see if it is ready for the implant yet. I thought it was going to be a simple, quick talking only visit. But silly me ... I mentioned a problem.
Remember back in May (when Manny was in the hospital with the flu and needing a blood transfusion), I felt like I lost a filling on my back lower tooth. No biggie I thought. The only problem was that the jagged edges were cutting my tongue. I eventually got used to it and that was that. I figured it would be an easy stick the filling back in at the same time as the implant (scheduled for end of July). So imagine my shock when he said that the filling was actually still there and it was a "sink hole". The whole tooth collapsed in on itself. The nerve was exposed and there was major major decay. He couldn't believe I wasn't screaming in pain. And the infection in it was certainly causing my heart some complications. Great! So I figured today was as good as any day to do it.
Oh, and the only interesting thing was ... he kept having to give more anesthesia as he couldn't find the nerve for that tooth. He stuck me like 20 times and finally just did a block at the whole nerve root way up in my upper lip. I have holes everywhere. And even that didn't work completely and he had to do one right into the tooth itself. And still I could feel it, not just pressure but pain. Yikes! He kept saying I have unusual anatomy! I told him I wasn't surprised that I am "different" ... I am in every area of life, so why not this? LOL
But it certainly explains why the bone graft dry socket was such a problem back in February. The alternate dentist didn't even CHECK to see if I was numb when he went to repair it. He just assumed and went in. I told him it hurt like heck and he didn't believe me. Yowzers! Now I know why that hurt so much!!
So I sit here with vicodin on board and it's barely taking the edge off the pain. (And I'm one who doesn't even do tylenol etc. typically).
Finally, cute Manny story ... All the kids and went to a restaurant and ordered food. Manny ordered a "Chicken Mouse". LOL
I guess to a child that doesn't eat and never has eaten, that food makes as much sense as any other!
Jun 27, 2012
Broviac, a strange birthday present
So ... today is Manny's 3rd birthday. We celebrated on Sunday though. But instead of doing the normal things on a birthday, he decided the hospital would be more fun.
Let me backtrack. Remember how his broviac had an "abrasion" on it? They didn't want to repair it until they had to since it is sooo close to his skin. Well, up through last week, we were just really careful with it and there were no problems. Last Wednesday the dressing change was done. By Monday it was seeping (slow leak). I contacted our IV team and they felt it was "time". I was to call today and schedule an appointment for later in the week to get it done.
BUT ... instead, he had different plans. The dressing was changed yesterday and the line was not used until 8:30pm. By morning, his dressing was completely wet. That's not a good sign. So we went into high gear to get him in today.
Many phone calls later, we were on our way to the hospital and were admitted into a regular room. The IV team assessed him and felt they would try to do the repair. Standard protocol is that they need about 1 1/2 inches or more to do the repair and his is closer to 1 inch. So it was going to be a tight repair.
Surgery was standing by just in case if it didn't work.
How do they repair it? They do a hemostat (clamp) below the cut to stop the blood from coming back out the line. Then they cut the line. YES, completely CUT THE LINE. I think I let out an audible sigh (even though I knew this was coming), it's still a bit freaky.
Then they put on a whole entire new line to connect to the part coming out of the skin. And they basically super glue the two sides together. Wait about 4 hours and voila! It's all done. Repairs can last months (or not).
But bottom line is ... it WORKED~!! They got it. It was tight but they did it. And we all breathed a huge sigh of relief.
So after 4 hours, we can go HOME! Seriously!! Isn't that nuts? We will be here for less than 7 hours (shorter than an ER visit). Very thankful that it worked and for the VIP treatment.
And while we were in the treatment room doing the procedure, they put up a Happy 3rd Birthday Manny Sign and gave him presents!
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So now we're just sitting here waiting for the glue to dry. Another 3 hours or so.
In the next few days, I'm hoping to finish posting about Denver and add the blog about the birthday party for Jacob, Zoe and Manny. I'm very far behind but felt you would all appreciate the update about this hospitalization.
Let me backtrack. Remember how his broviac had an "abrasion" on it? They didn't want to repair it until they had to since it is sooo close to his skin. Well, up through last week, we were just really careful with it and there were no problems. Last Wednesday the dressing change was done. By Monday it was seeping (slow leak). I contacted our IV team and they felt it was "time". I was to call today and schedule an appointment for later in the week to get it done.
BUT ... instead, he had different plans. The dressing was changed yesterday and the line was not used until 8:30pm. By morning, his dressing was completely wet. That's not a good sign. So we went into high gear to get him in today.
Many phone calls later, we were on our way to the hospital and were admitted into a regular room. The IV team assessed him and felt they would try to do the repair. Standard protocol is that they need about 1 1/2 inches or more to do the repair and his is closer to 1 inch. So it was going to be a tight repair.
Surgery was standing by just in case if it didn't work.
How do they repair it? They do a hemostat (clamp) below the cut to stop the blood from coming back out the line. Then they cut the line. YES, completely CUT THE LINE. I think I let out an audible sigh (even though I knew this was coming), it's still a bit freaky.
Then they put on a whole entire new line to connect to the part coming out of the skin. And they basically super glue the two sides together. Wait about 4 hours and voila! It's all done. Repairs can last months (or not).
But bottom line is ... it WORKED~!! They got it. It was tight but they did it. And we all breathed a huge sigh of relief.
So after 4 hours, we can go HOME! Seriously!! Isn't that nuts? We will be here for less than 7 hours (shorter than an ER visit). Very thankful that it worked and for the VIP treatment.
And while we were in the treatment room doing the procedure, they put up a Happy 3rd Birthday Manny Sign and gave him presents!
.jpg)
So now we're just sitting here waiting for the glue to dry. Another 3 hours or so.
In the next few days, I'm hoping to finish posting about Denver and add the blog about the birthday party for Jacob, Zoe and Manny. I'm very far behind but felt you would all appreciate the update about this hospitalization.
Jun 21, 2012
Snow, monkey bars and rivers
Tuesday: Time to drive from Golden (Denver area) to Breckinridge. We decided on the scenic route and I'm so thrilled we did. We drove the 2 hours and around every corner is another amazing vista. The photos can't begin to capture but I kept snapping hoping that SOME part of the essence could be felt.
Up at the top is Loveland Pass on the Continental Divide. The sign says, "11,990 feet". It was very very cold and windy up there. And the kids saw snow just a little ways off. So they decided they would go touch snow. OK, clearly, it wasn't the powdery stuff that makes a nice snowman but it didn't stop them. They all tredged down the hill and got to the patch of snow. I stayed up at the top (wise woman that I am). Dan went down carrying Manny and has some more photos on our camera that have yet to be uploaded of them closer. Maybe I'll do another post later with the highlights from that camera.
Anyway, I saw Luke and Sam thowing snowballs at each other. Kaley found a 2x4 and they dubbed it the sled and started sliding down the hill on it. They were giggling and having the best time. People at the top of the hill with me were enjoying wathching their first experience with snow. I told them the kids are from Florida and they understood. (Zoe is the only one to remember touching snow ... she did it in China at 4 when we went back. Luke touched it at 18 months but doesn't remember it. The rest have never touched it.)
Wet and freezing, they ended up back at the car. Their faces told the story that the mess in the car was well worth it!.
Then it was off to the rest of the trip. Breathtaking views at every turn. Hard to describe. Impressed with God's magnitude. And reminded of the verse that says we can speak to the Mountain and tell it to move. And Manny's favorite song, "Mighty to Save" where it says, "He can move the mountains" and Manny kept singing it. All that makes my heart smile.
We got to the house and settled in and Dan wanted to climb a mountain by himself so he took off. A little while later he came back and was limping. He rested his foot on a stump that looked secure but wasn't and he went tumbling down the mountain. Thankfully the only result was a very torked knee. But this caused great troubles. He can barely walk. At first, we weren't sure the extent of the injury but now it seems it was just nicely twisted. In the meantime, do you know how hard it is to get Manny, his chair and 5 other kids in and out of places? Most of Colorado is not wheelchair friendly as you would expect.
But we're managing.
Wednesday: we hung out at a local park. We went for a walk around town. This was a challenge because Dan is barely able to walk at all. But again, we managed. It was actually a beautiful day. We went to a restarant and hung out. We let the kids play in the stream. Perfect day.
I don't know if you can see the outline on the sidewalk next to Zoe but it is in the EXACT same position as Zoe. We were on a walk and found these kid scribbles in chalk. (Again with the death scene!) The upper right is them on a chair lift. Bottom two are just Manny being Manny. :)
Up at the top is Loveland Pass on the Continental Divide. The sign says, "11,990 feet". It was very very cold and windy up there. And the kids saw snow just a little ways off. So they decided they would go touch snow. OK, clearly, it wasn't the powdery stuff that makes a nice snowman but it didn't stop them. They all tredged down the hill and got to the patch of snow. I stayed up at the top (wise woman that I am). Dan went down carrying Manny and has some more photos on our camera that have yet to be uploaded of them closer. Maybe I'll do another post later with the highlights from that camera.
Anyway, I saw Luke and Sam thowing snowballs at each other. Kaley found a 2x4 and they dubbed it the sled and started sliding down the hill on it. They were giggling and having the best time. People at the top of the hill with me were enjoying wathching their first experience with snow. I told them the kids are from Florida and they understood. (Zoe is the only one to remember touching snow ... she did it in China at 4 when we went back. Luke touched it at 18 months but doesn't remember it. The rest have never touched it.)
Wet and freezing, they ended up back at the car. Their faces told the story that the mess in the car was well worth it!.
Then it was off to the rest of the trip. Breathtaking views at every turn. Hard to describe. Impressed with God's magnitude. And reminded of the verse that says we can speak to the Mountain and tell it to move. And Manny's favorite song, "Mighty to Save" where it says, "He can move the mountains" and Manny kept singing it. All that makes my heart smile.
More of the drive up to Breckenridge.
We got to the house and settled in and Dan wanted to climb a mountain by himself so he took off. A little while later he came back and was limping. He rested his foot on a stump that looked secure but wasn't and he went tumbling down the mountain. Thankfully the only result was a very torked knee. But this caused great troubles. He can barely walk. At first, we weren't sure the extent of the injury but now it seems it was just nicely twisted. In the meantime, do you know how hard it is to get Manny, his chair and 5 other kids in and out of places? Most of Colorado is not wheelchair friendly as you would expect.
But we're managing.
Wednesday: we hung out at a local park. We went for a walk around town. This was a challenge because Dan is barely able to walk at all. But again, we managed. It was actually a beautiful day. We went to a restarant and hung out. We let the kids play in the stream. Perfect day.
Zoe is (apparently) a monkey~
Kaley is a beauty in any position~
I don't know if you can see the outline on the sidewalk next to Zoe but it is in the EXACT same position as Zoe. We were on a walk and found these kid scribbles in chalk. (Again with the death scene!) The upper right is them on a chair lift. Bottom two are just Manny being Manny. :)
The river was a bit icey but the kids actually managed to stay DRY! Imagine that. (I was the most shocked person about that~)
Standing for a quick picture in front of the beautiful river.
Jun 20, 2012
Trains and divers and beers, oh my
Summary post written towards the end of our vacation:
Saturday, June 9: hard to function on 3 hours of sleep preceeded by sheer terror. (How's that for an observation?) We all just muddled through the day. Thankfully it was just a lazy hang around the house day. Shari and Pat (brother in law and sister in law) were very gracious hosts. They cooked very nice meals for the zombies. The day was uneventful. (Just like we like it). Manny started acting completely himself.
But ... now Luke acted strange. He had a horrible headache and was having a hard time breathing. He is 9 and has some pretty significant asthma and a repaired heart condition. We gave him plenty of water, fluids, extra asthma meds, etc. But he was still showing some signs of mild altitude sickness. This lasted until Monday when he just snapped out of it thankfully! He's had no issues since.
Sunday: Drove to Colorado Springs to look at the "garden of the gods" and meet up with some friends of Dan's/mine from college. I knew we had friends all over the area and that lots of people would want to hook up with us if they knew. (So sorry if you're local and we didn't pop in to say hi.) So I just determined that I wouldn't tell anyone we were there so I didn't have to pick and choose who I would see who I wouldn't. (AWKWARD!)
We have a nice time eating lunch and dinner with Rich and Lisa and their kids (Hadn't seen them in almost 20 years). And the drive to Colorado Springs was amazing. Living at sea level, we don't see mountains! They're just breathtaking.
The garden of the gods is quite spectacular too. Such interesting topography. I always look at a mountain and wonder what it's seen. What tales could it tell if it could talk.
Saturday, June 9: hard to function on 3 hours of sleep preceeded by sheer terror. (How's that for an observation?) We all just muddled through the day. Thankfully it was just a lazy hang around the house day. Shari and Pat (brother in law and sister in law) were very gracious hosts. They cooked very nice meals for the zombies. The day was uneventful. (Just like we like it). Manny started acting completely himself.
But ... now Luke acted strange. He had a horrible headache and was having a hard time breathing. He is 9 and has some pretty significant asthma and a repaired heart condition. We gave him plenty of water, fluids, extra asthma meds, etc. But he was still showing some signs of mild altitude sickness. This lasted until Monday when he just snapped out of it thankfully! He's had no issues since.
Sunday: Drove to Colorado Springs to look at the "garden of the gods" and meet up with some friends of Dan's/mine from college. I knew we had friends all over the area and that lots of people would want to hook up with us if they knew. (So sorry if you're local and we didn't pop in to say hi.) So I just determined that I wouldn't tell anyone we were there so I didn't have to pick and choose who I would see who I wouldn't. (AWKWARD!)
We have a nice time eating lunch and dinner with Rich and Lisa and their kids (Hadn't seen them in almost 20 years). And the drive to Colorado Springs was amazing. Living at sea level, we don't see mountains! They're just breathtaking.
The garden of the gods is quite spectacular too. Such interesting topography. I always look at a mountain and wonder what it's seen. What tales could it tell if it could talk.
I, of course, have tons more pictures but won't bore you with all the photos. They can't possibly do justice to the beauty and magnitude of a mountain. There is just no way to capture them well. I will suffice to say, God does amazing work!
Monday: Train Museum and Coors tour
Manny is a huge train fan. (What almost 3 year old boy isn't?) And there is a train museum right here in Golden where we are staying. We explored for a few hours and here are some highlight pics of that day.
Luke decided to have a "death by train" theme. 9 year old little boys, what can you do with them? :)
Manny was quite in heaven. At the end, we bought some lego train sets and a thomas train set. He didn't want to leave. I think he'd like to live here.
Sam ... not sure what a "coupler" is but apparently it belongs to Sam so he did his best Vanna White impression upon the discovery. And yes, that IS them pretending to be in a bar fight with pretend beer bottles.
Zoe ... eclectic collection of photos. Mostly sweet, and one death scene to match Luke
Kaley ... the sunflower was as tall as she is!
I could get shots of Jacob as long as he didn't know I was taking a picture! LOL
Then it was time to tour the Coors factory. Driving up to it ... I was impressed with how HUGE the plant is. I've seen numerous factory produced items (beer, cereal, cars, etc.) and I'm always amazed by the process and thought the kids would be too. It was a fun couple of hours to see this. And yes, the free beer was nice too. Kids got root beer.
Casa Bonita for early dinner was next on the agenda. This place is amazing. The kids could have lived here too. There is good mexican food for starters. Then there are Alcapulco style cliff divers INSIDE the restaurant. Plus mazes, arcades, riding games, gift shop, etc. The kids were in heaven. Except Manny. He didn't appreciate the pretend gun fight as soon as we arrived and freaked a bit. (He has some sensory integration disorder symptoms and this was major overload.) He took a rare nap in my arms. So I have only one (bad) picture of this amazing restaurant.
And Zoe was not a fan of the maze. Apparently it had a scary theme to it. She's normally all gung-ho about such things and nothing frightens her. But this was sheer terror. I'm always fascinated how something can trigger past emotions. Might be a sound, smell or whatever and the person is not reacting to what is in front of them but to an event long passed. Zoe has some trauma in her past (understatement) and this seemed to trigger it! Thankfully Aunt Shari was right there to give her some good Mama loving. But the next day, she seemed completely over it.
So those are some of the highlights from our first few days in Denver. Next? Trip to Breckenridge.
Jun 19, 2012
Welcome to Denver
The kids finished school at noon. At 3pm, we had the van loaded and were headed out the door to the airport.
Remember how we were scheduled to go to Denver in December but Manny thought ICU sounded more fun? Well, I had bought changeable tickets and now was the time to use them or lose them.
7 suitcases, 1 car seat, 1 wheel chair, 2 carry ons, 8 backpacks. Drive to the airport.
All was uneventful.
... UNTIL ...
It was time to turn Manny's TPN on. (He gets a 4 hour rest daily.) And the pump died. Completely would not work.
I am OCD about troubleshooting, trying things. We were praying. I tried everything. I even had brought back up tubing (a common issue) and that didn't help. NOTHING worked.
I knew he could last for a little while, but not long before his blood sugar crashed.
We had a plane stop in Kansas City (didn't leave the plane, just dropped off passengers and picked up others). The transition was like 25 minutes. During that time, I called the Home health company and told our new Pharmacist, Dana, what was going on and that I'd need a pump in Denver either delivered to the airport or the house where we're staying. And then we were back in the air again.
He was fine.
You have to remember that this was about 9pm by this time and he usually goes to sleep by about 8pm. So he fell asleep and I thought nothing of it. It was pitch black in the cabin.
The flight from Kansas to Denver was only about 1 hour 15 minutes. I started getting that "strange" feeling. About 20 minutes before we landed, I repositioned him and he was dripping wet but FREEZING. I couldn't wake him up and his eyes were opened. It was Eeeerie. I carry his glucometer with me everywhere and have never needed it on the road but the TSA wouldn't allow it on the plane so we had to check it. So I didn't have it. I needed it to confirm just how low his blood sugar was and couldn't.
Got out of the plane to assess him better and see if we could rush to the baggage claim and get his glucometer but as I got him up and held him, I knew we wouldn't make it that far. I ran with him to the information center just a few feet away from the gate. I yelled, "Call 911". They did. Everyone rushed. They called a "Code 10" which is the highest code. Medics arrived and by the grace of God, they listened to me.
Welcome to Denver!
Unfortunately, the medics were unfamiliar with TPN, broviacs, central lines, etc. so I had to walk them through the whole thing ... but they listened! They were going to hang a bag of "sugar water" with 25% dextrose. And while that is a good thought, he's on 20% round the clock so this would not get him out of this soon enough.
They had a glucometer and it read "07". No, not kidding.
His eyes were opened but glassy. He wasn't there. He had this strange facial "tic" and a strange breathing pattern with very low respiratory rate.
The medic called the on call airport doctor who authorized an amp of D 50 via his broviac. (That was what I was suggesting.) Within about 5 minutes, he started moving. Eventually he was crying and coming around. They retested blood sugar and it was almost 400... but that was good news. I started to breathe for the first time.
In the meantime, the kids were standing there with their backpacks and carryons (it was 11 pm EST) and looks of terror on their faces. Meanwhile, Dan was on the phone with the home health agency and letting them know what was going on. He was supposed to be talking to the pharmacist (the person I'd called earlier) but somehow got patched through to the wrong person so they were lost and confused.
The Denver airport acted with a lot of professionalism. I was very impressed with how well they handled this horrifying event. I could see the terror in their eyes, but they did the right things in a timely manner. I will forever be grateful.
The ambulance arrived to take Manny and me to the local children's hospital and Dan and the kids were escorted around the airport by the police officer. Apparently she was amazing in helping get the luggage, the rental car, an escort, etc etc. So yay! Way to go Denver. (Manny and I also got a police escort off the airport grounds.)
In the meantime, I was in the ambulance with Manny and he was headed back to his usual self. He was shaken up and tired but talking and responsive. By the time we got to the hospital, it was 2am EST. Exhausted is beyond the word. I am a GREAT person in an emergency ... calm and together. But I fall apart later as I let it hit me emotionally. And as I sat in the ER room with just him and me, it started to hit me just how close to death he was.
The ER staff, the paramedics had never seen a blood sugar that low before. They said they've seen teens, but never 7.
But by now, he was stable. And I had the fortune to have an ER doc that worked at CHOP with very complex kids before and he listened to me. He asked, "If the pump had not malfunctioned, are you 100% confident that he would not have had this issue?" YES I told him. So he said, then we just need to get you a pump.
They worked on it. I worked on it. Eventually, I got hold of the Denver branch of our home health agency and they were able to get a pump (and a back up.) It all took a long time but it all worked out. Then it took a while to figure out the new pump, but I did.
Meanwhile, Dan was in the waiting room with the kids and his sister. We were discharged about 2:30am Mountain time (4:30am our normal time zone).
Then the 45 minute drive to sister's house. The baby SCREAMED the entire way. He was freaking out about something and we never figured out what. So I crawled in the backseat with him and
held his ears tightly as Sam covered his eyes. Eventually he calmed down some. He kept saying something about his eyes and we had no clue what he meant.
Arrived at the house and we hurried in, tried to get everyone settled and in bed. By then it was 3:30am local time and we'd been up for 24 hours ... all of us. (Well, except Manny who caught a few winks at the ER.)
I laid Manny in the bed and he FREAKED. He kept screaming about bugs. Now sometimes he says there are bugs on him, but that's his way of saying he is itchy. He was saying he was SEEING bugs. There were no bugs. I don't know if they were on his eyes or a hallucination. Either way, it was very freaky. He kept pointing, "RIGHT THERE!" and was quite upset that I didn't see it.
We slept for only 3 hours before Manny woke up and having a few problems. We got out and hung out. His blood sugar was stable. He was acting pretty much himself. The rest of us were dead tired.
This next part written a week after the fact:
Bottomline is that he shouldn't have crashed that fast! When we get home, I'm needing to have a serious sit down conversation with several of his doctors. We must get to the bottom of this. This was waaaay tooo close! I will need the back up pump and a back up emergency sugar supply (such as a bolus of sugar or glucagon shot or something). Plus we need to establish WHY is he doing this. I don't know how many times a body can bottom out like that and what are the long term effects of doing so.
Over the next few days, I did checks of his blood sugar and they were pretty stable. Still on the lowish side but stable. I've determined that when he is off for 3 hours, we're still usually ok but no longer stable by 4 hours (which is the protocol for now).
And me? I think I need some PTSD counseling. I'm amazing in an emergency. I'm the one you want by your side making clear thinking decisions and communicating acurately. But after? I allow it to hit me and that's when I fall apart. For the next couple of days, every time the thought was pass my head, I would burst into tears. I knew I was not processing it well. Took several days to come to grips with the whole reality of the situation.
What was my main issue? I believe God saved his life yet again. And in true God form, He likes Drama apparently. Me? Not a fan. But Manny got to be a light and witness to many people. And I'm thrilled that God let us keep him again. It's a CLEAR reminder that GOD only is in charge of the number of our days. And for some reason, He wants it on the forefront of my mind that Manny is always only minutes away from life and death. (gulp)
But my hangup is this ... why does Manny have to suffer so much? I don't think this is a lesson for him. He's TWO afterall. He's a baby! I can wrap my head around that I need to learn/do something or that others need to see the way we handle trials so that they can choose a Godly life or any number of possibilities. But Manny? I'm having a hard time with why he has to suffer so much.
And until I understand, I just keep plugging along. Trying to make the best decisions I possibly can.
And I am thankful. I get to keep my precious little boy.
Remember how we were scheduled to go to Denver in December but Manny thought ICU sounded more fun? Well, I had bought changeable tickets and now was the time to use them or lose them.
7 suitcases, 1 car seat, 1 wheel chair, 2 carry ons, 8 backpacks. Drive to the airport.
All was uneventful.
... UNTIL ...
It was time to turn Manny's TPN on. (He gets a 4 hour rest daily.) And the pump died. Completely would not work.
I am OCD about troubleshooting, trying things. We were praying. I tried everything. I even had brought back up tubing (a common issue) and that didn't help. NOTHING worked.
I knew he could last for a little while, but not long before his blood sugar crashed.
We had a plane stop in Kansas City (didn't leave the plane, just dropped off passengers and picked up others). The transition was like 25 minutes. During that time, I called the Home health company and told our new Pharmacist, Dana, what was going on and that I'd need a pump in Denver either delivered to the airport or the house where we're staying. And then we were back in the air again.
He was fine.
You have to remember that this was about 9pm by this time and he usually goes to sleep by about 8pm. So he fell asleep and I thought nothing of it. It was pitch black in the cabin.
The flight from Kansas to Denver was only about 1 hour 15 minutes. I started getting that "strange" feeling. About 20 minutes before we landed, I repositioned him and he was dripping wet but FREEZING. I couldn't wake him up and his eyes were opened. It was Eeeerie. I carry his glucometer with me everywhere and have never needed it on the road but the TSA wouldn't allow it on the plane so we had to check it. So I didn't have it. I needed it to confirm just how low his blood sugar was and couldn't.
Got out of the plane to assess him better and see if we could rush to the baggage claim and get his glucometer but as I got him up and held him, I knew we wouldn't make it that far. I ran with him to the information center just a few feet away from the gate. I yelled, "Call 911". They did. Everyone rushed. They called a "Code 10" which is the highest code. Medics arrived and by the grace of God, they listened to me.
Welcome to Denver!
Unfortunately, the medics were unfamiliar with TPN, broviacs, central lines, etc. so I had to walk them through the whole thing ... but they listened! They were going to hang a bag of "sugar water" with 25% dextrose. And while that is a good thought, he's on 20% round the clock so this would not get him out of this soon enough.
They had a glucometer and it read "07". No, not kidding.
His eyes were opened but glassy. He wasn't there. He had this strange facial "tic" and a strange breathing pattern with very low respiratory rate.
The medic called the on call airport doctor who authorized an amp of D 50 via his broviac. (That was what I was suggesting.) Within about 5 minutes, he started moving. Eventually he was crying and coming around. They retested blood sugar and it was almost 400... but that was good news. I started to breathe for the first time.
In the meantime, the kids were standing there with their backpacks and carryons (it was 11 pm EST) and looks of terror on their faces. Meanwhile, Dan was on the phone with the home health agency and letting them know what was going on. He was supposed to be talking to the pharmacist (the person I'd called earlier) but somehow got patched through to the wrong person so they were lost and confused.
The Denver airport acted with a lot of professionalism. I was very impressed with how well they handled this horrifying event. I could see the terror in their eyes, but they did the right things in a timely manner. I will forever be grateful.
The ambulance arrived to take Manny and me to the local children's hospital and Dan and the kids were escorted around the airport by the police officer. Apparently she was amazing in helping get the luggage, the rental car, an escort, etc etc. So yay! Way to go Denver. (Manny and I also got a police escort off the airport grounds.)
In the meantime, I was in the ambulance with Manny and he was headed back to his usual self. He was shaken up and tired but talking and responsive. By the time we got to the hospital, it was 2am EST. Exhausted is beyond the word. I am a GREAT person in an emergency ... calm and together. But I fall apart later as I let it hit me emotionally. And as I sat in the ER room with just him and me, it started to hit me just how close to death he was.
The ER staff, the paramedics had never seen a blood sugar that low before. They said they've seen teens, but never 7.
But by now, he was stable. And I had the fortune to have an ER doc that worked at CHOP with very complex kids before and he listened to me. He asked, "If the pump had not malfunctioned, are you 100% confident that he would not have had this issue?" YES I told him. So he said, then we just need to get you a pump.
They worked on it. I worked on it. Eventually, I got hold of the Denver branch of our home health agency and they were able to get a pump (and a back up.) It all took a long time but it all worked out. Then it took a while to figure out the new pump, but I did.
Meanwhile, Dan was in the waiting room with the kids and his sister. We were discharged about 2:30am Mountain time (4:30am our normal time zone).
Then the 45 minute drive to sister's house. The baby SCREAMED the entire way. He was freaking out about something and we never figured out what. So I crawled in the backseat with him and
held his ears tightly as Sam covered his eyes. Eventually he calmed down some. He kept saying something about his eyes and we had no clue what he meant.
Arrived at the house and we hurried in, tried to get everyone settled and in bed. By then it was 3:30am local time and we'd been up for 24 hours ... all of us. (Well, except Manny who caught a few winks at the ER.)
I laid Manny in the bed and he FREAKED. He kept screaming about bugs. Now sometimes he says there are bugs on him, but that's his way of saying he is itchy. He was saying he was SEEING bugs. There were no bugs. I don't know if they were on his eyes or a hallucination. Either way, it was very freaky. He kept pointing, "RIGHT THERE!" and was quite upset that I didn't see it.
We slept for only 3 hours before Manny woke up and having a few problems. We got out and hung out. His blood sugar was stable. He was acting pretty much himself. The rest of us were dead tired.
This next part written a week after the fact:
Bottomline is that he shouldn't have crashed that fast! When we get home, I'm needing to have a serious sit down conversation with several of his doctors. We must get to the bottom of this. This was waaaay tooo close! I will need the back up pump and a back up emergency sugar supply (such as a bolus of sugar or glucagon shot or something). Plus we need to establish WHY is he doing this. I don't know how many times a body can bottom out like that and what are the long term effects of doing so.
Over the next few days, I did checks of his blood sugar and they were pretty stable. Still on the lowish side but stable. I've determined that when he is off for 3 hours, we're still usually ok but no longer stable by 4 hours (which is the protocol for now).
And me? I think I need some PTSD counseling. I'm amazing in an emergency. I'm the one you want by your side making clear thinking decisions and communicating acurately. But after? I allow it to hit me and that's when I fall apart. For the next couple of days, every time the thought was pass my head, I would burst into tears. I knew I was not processing it well. Took several days to come to grips with the whole reality of the situation.
What was my main issue? I believe God saved his life yet again. And in true God form, He likes Drama apparently. Me? Not a fan. But Manny got to be a light and witness to many people. And I'm thrilled that God let us keep him again. It's a CLEAR reminder that GOD only is in charge of the number of our days. And for some reason, He wants it on the forefront of my mind that Manny is always only minutes away from life and death. (gulp)
But my hangup is this ... why does Manny have to suffer so much? I don't think this is a lesson for him. He's TWO afterall. He's a baby! I can wrap my head around that I need to learn/do something or that others need to see the way we handle trials so that they can choose a Godly life or any number of possibilities. But Manny? I'm having a hard time with why he has to suffer so much.
And until I understand, I just keep plugging along. Trying to make the best decisions I possibly can.
And I am thankful. I get to keep my precious little boy.
May 24, 2012
Things change around here fast
I must get something off my chest:
Some people should just NOT be night nurses, techs or therapists. (I feel better now.)
Yesterday, Manny was still too weak to get out of bed and sit in his wheelchair (trust me, I tried several times). But he was feeling a bit better (he's getting 5 days of iron iv and also iv antibiotics which are both helping). I was able to keep him awake all day (like normal for home). And he went to sleep at his regular bedtime.
Sounds heavenly, huh? Well, that is until TWO hours later, the medical personnel had to come in his room and they were acting like it was 10 am, not 10 pm. Talking in regular voices, flipping on lights (needless ones) and talking TO him/interacting playfully. He grumped at them because he was trying to sleep and then they tried to comfort him and then tried to chide him for being grumpy. When all he wanted was some S.L.E.E.P.
I was whispering. I was quietly moving around the room. (Trying to model the proper behavior.) But they weren't getting it.
They would leave and he would shut up. I thought he was sending a very clear message.
It only took a few hours before they put oxygen on him. (I felt he was borderline to needing it earlier in the evening but it wasn't clear cut and then it became clear.) He slept (semi) peacefully for the rest of the night.
He was only awake about 20 times ... which yes, is a lot, but much better than most of the nights we've had since being here. He would actually sleep for stretches of about 30 minutes sometimes. LOVE that.
So what's the plan? Today we have Doc's protege as our doctor. She will come in later and assess him. If he sounds fairly clear, I am going to push to see how soon we can go home. Afterall, right now, they are only doing things that I can do for him at home. I don't want to take him home and jeopardize his life/safety though either. And I think today it's not clear cut. So I have to put our fates in the hand of a person whose judgment isn't always in line with mine.
Our regular doctor (the one whose judgment I do trust implicitly) is gone for 2 days. This should be interesting.
Meanwhile, not sure if I updated you on this or not. I'll give the summary version here. OK you know how Manny's iron stores were very, very low? They gave him a blood transfusion which should help (and it did). Then they did 2 days of iron in his tummy tube. That did NOT agree with him in any way and we're still dealing with the risidual effects of that. Then he had 3 days of IV iron. That helped. I was actually happy with his hemoglobin levels... highest they have been in forever. But the hematologist came by yesterday and said she wants them closer to normal. So she started him on 2 more days of IV iron. Then we will monitor weekly to ensure his levels remain high.
To be more specific, his hemoglobin was about 9.6 since his last blood transfusion in mid February. Then it started to decline mid april. It hit 8.2 and he started to show signs of distress. By 8 I knew he needed to get his hiney in the hospital. By the time we got here, it was 7.3 and several of his labs were in "critical values".
After his transfusion this time he went back to 9.6 so I thought everyone would be happy. The hematologist started with the iron and it went to 10.8 and I was thrilled. Hematologist wants him closer to normal range (for his gender and age, it would be closer to 14!) Really? Wow. Again, I repeat that I am thrilled to have someone looking at the labs besides ME.
10:15am, Respiratory therapist just came in ... even after his breathing treatments he still sounds "coarse" and "diminished". Those are code words for "we are not going any where". :(
And I think I told you that his broviac line has the beginnings of a crack on it. The nurses are FREAKED OUT about it. Seriously! They don't want to touch his line. They keep checking it to see if it's burst or not. Me? I'm fine with the whole thing. I'm careful. I'm prepared. In an emergency (like the line breaks) then I know what to do. I'm not thrilled knowing this thing could blow at any time, but it's just another one of those things that Manny likes to do to keep us on our toes.
.....
9pm FROM HOME!!!
OK so that's a lot of time in between and a huge change so I'll try to update what happened.
Last night I told the night nurse that if Manny did well that I would see if we could be discharged today. Guess the night nurse told the day nurse. Then to my shock, Doc was actually on call afterall today. The day nurse told him that I was ready to go. So when he walked in, he said, "A little birdie tells me you're ready to go home."
I told him that if he was the same or better, that I felt I could handle this illness at home. If it was worse, I would happily stay. But I left it up to his judgment call. He listened to Manny and said no better, no worse. He said that since I am who I am and I have all the same medicines and machines at home (including oxygen) that I could go home! I actually mostly didn't believe it. Afterall, if I took Manny into the doctor today, she would likely admit us. So clearly, he is still very sick. And of course I know the warning signs to take him back and would.
They got discharge papers and sent us home!
The next few hours were a whirlwind of activity. Driving home. Getting lunch (FOOD is a good thing!!)
Then my hospital world and my home world collide ... HARD. It's a hard transition. The kids at home are needy of their mother who has been absent for more than a week. Luke has still been sick and tomorrow will be his first day back to school since I left. Kaley is still at 103 plus fevers. (She has the same thing Manny has so no way for him to get it from her by the way.) House is messy (though sister came and helped out last night, THANKS). Phone calls to make, mail to deal with, medicines to pick up, dinner, homework, laundry ... you know ... LIFE.
And on top of it, a baby with mild pneumonia. And me NOT getting the flu. (Keep repeating that!)
Then bedtime ... I had 6 machines to set up for Manny. Many of which I haven't used in months. Why? Because this is his first respiratory thing in months. So a nebulizer, vaporizer, oxygen concentrator, pulse ox, his TPN, etc etc. Our room has so many machines in it that Dan decided to sleep in another room tonight.
So at 9pm, all the kids are sleeping but Manny. I am about to crash and I realized that I had so many of you left hanging that I owed it to you to let you know the day that turned on a dime.
He will be on IV antibiotics for the next 8 days. The home health company sent me the antibiotics tonight and I am going to just hook them up to his broviac daily. Cool.
Finally, about 6 pm, got a call from Boston Motility Clinic. I am in SHOCK. They said they did want to expedite his case. They are currently making appointments for December. But they wanted to see if we could be there June 25? Uh ... YES YES YES.
So we will be in Boston for Manny's 3rd birthday (that's June 26... not exactly my plans for his day but plans can be changed). They currently have us being admitted on June 25 and being discharged on June 27 (if all goes according to plan).
What is this appointment about? There are allegedly only 3 clinics in the country that are specialized enough to try to figure out what is going on with Manny's gut and his inability to eat. IF we even have the POSSIBILITY of getting off TPN, it's worth the shot!! We must try.
So there (in a nutshell) is my day.
Things change around here FAST!
Some people should just NOT be night nurses, techs or therapists. (I feel better now.)
Yesterday, Manny was still too weak to get out of bed and sit in his wheelchair (trust me, I tried several times). But he was feeling a bit better (he's getting 5 days of iron iv and also iv antibiotics which are both helping). I was able to keep him awake all day (like normal for home). And he went to sleep at his regular bedtime.
Sounds heavenly, huh? Well, that is until TWO hours later, the medical personnel had to come in his room and they were acting like it was 10 am, not 10 pm. Talking in regular voices, flipping on lights (needless ones) and talking TO him/interacting playfully. He grumped at them because he was trying to sleep and then they tried to comfort him and then tried to chide him for being grumpy. When all he wanted was some S.L.E.E.P.
I was whispering. I was quietly moving around the room. (Trying to model the proper behavior.) But they weren't getting it.
They would leave and he would shut up. I thought he was sending a very clear message.
It only took a few hours before they put oxygen on him. (I felt he was borderline to needing it earlier in the evening but it wasn't clear cut and then it became clear.) He slept (semi) peacefully for the rest of the night.
He was only awake about 20 times ... which yes, is a lot, but much better than most of the nights we've had since being here. He would actually sleep for stretches of about 30 minutes sometimes. LOVE that.
So what's the plan? Today we have Doc's protege as our doctor. She will come in later and assess him. If he sounds fairly clear, I am going to push to see how soon we can go home. Afterall, right now, they are only doing things that I can do for him at home. I don't want to take him home and jeopardize his life/safety though either. And I think today it's not clear cut. So I have to put our fates in the hand of a person whose judgment isn't always in line with mine.
Our regular doctor (the one whose judgment I do trust implicitly) is gone for 2 days. This should be interesting.
Meanwhile, not sure if I updated you on this or not. I'll give the summary version here. OK you know how Manny's iron stores were very, very low? They gave him a blood transfusion which should help (and it did). Then they did 2 days of iron in his tummy tube. That did NOT agree with him in any way and we're still dealing with the risidual effects of that. Then he had 3 days of IV iron. That helped. I was actually happy with his hemoglobin levels... highest they have been in forever. But the hematologist came by yesterday and said she wants them closer to normal. So she started him on 2 more days of IV iron. Then we will monitor weekly to ensure his levels remain high.
To be more specific, his hemoglobin was about 9.6 since his last blood transfusion in mid February. Then it started to decline mid april. It hit 8.2 and he started to show signs of distress. By 8 I knew he needed to get his hiney in the hospital. By the time we got here, it was 7.3 and several of his labs were in "critical values".
After his transfusion this time he went back to 9.6 so I thought everyone would be happy. The hematologist started with the iron and it went to 10.8 and I was thrilled. Hematologist wants him closer to normal range (for his gender and age, it would be closer to 14!) Really? Wow. Again, I repeat that I am thrilled to have someone looking at the labs besides ME.
10:15am, Respiratory therapist just came in ... even after his breathing treatments he still sounds "coarse" and "diminished". Those are code words for "we are not going any where". :(
And I think I told you that his broviac line has the beginnings of a crack on it. The nurses are FREAKED OUT about it. Seriously! They don't want to touch his line. They keep checking it to see if it's burst or not. Me? I'm fine with the whole thing. I'm careful. I'm prepared. In an emergency (like the line breaks) then I know what to do. I'm not thrilled knowing this thing could blow at any time, but it's just another one of those things that Manny likes to do to keep us on our toes.
.....
9pm FROM HOME!!!
OK so that's a lot of time in between and a huge change so I'll try to update what happened.
Last night I told the night nurse that if Manny did well that I would see if we could be discharged today. Guess the night nurse told the day nurse. Then to my shock, Doc was actually on call afterall today. The day nurse told him that I was ready to go. So when he walked in, he said, "A little birdie tells me you're ready to go home."
I told him that if he was the same or better, that I felt I could handle this illness at home. If it was worse, I would happily stay. But I left it up to his judgment call. He listened to Manny and said no better, no worse. He said that since I am who I am and I have all the same medicines and machines at home (including oxygen) that I could go home! I actually mostly didn't believe it. Afterall, if I took Manny into the doctor today, she would likely admit us. So clearly, he is still very sick. And of course I know the warning signs to take him back and would.
They got discharge papers and sent us home!
The next few hours were a whirlwind of activity. Driving home. Getting lunch (FOOD is a good thing!!)
Then my hospital world and my home world collide ... HARD. It's a hard transition. The kids at home are needy of their mother who has been absent for more than a week. Luke has still been sick and tomorrow will be his first day back to school since I left. Kaley is still at 103 plus fevers. (She has the same thing Manny has so no way for him to get it from her by the way.) House is messy (though sister came and helped out last night, THANKS). Phone calls to make, mail to deal with, medicines to pick up, dinner, homework, laundry ... you know ... LIFE.
And on top of it, a baby with mild pneumonia. And me NOT getting the flu. (Keep repeating that!)
Then bedtime ... I had 6 machines to set up for Manny. Many of which I haven't used in months. Why? Because this is his first respiratory thing in months. So a nebulizer, vaporizer, oxygen concentrator, pulse ox, his TPN, etc etc. Our room has so many machines in it that Dan decided to sleep in another room tonight.
So at 9pm, all the kids are sleeping but Manny. I am about to crash and I realized that I had so many of you left hanging that I owed it to you to let you know the day that turned on a dime.
He will be on IV antibiotics for the next 8 days. The home health company sent me the antibiotics tonight and I am going to just hook them up to his broviac daily. Cool.
Finally, about 6 pm, got a call from Boston Motility Clinic. I am in SHOCK. They said they did want to expedite his case. They are currently making appointments for December. But they wanted to see if we could be there June 25? Uh ... YES YES YES.
So we will be in Boston for Manny's 3rd birthday (that's June 26... not exactly my plans for his day but plans can be changed). They currently have us being admitted on June 25 and being discharged on June 27 (if all goes according to plan).
What is this appointment about? There are allegedly only 3 clinics in the country that are specialized enough to try to figure out what is going on with Manny's gut and his inability to eat. IF we even have the POSSIBILITY of getting off TPN, it's worth the shot!! We must try.
So there (in a nutshell) is my day.
Things change around here FAST!
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