Between being busy with kids and the internet not working at the hospital, it's been a while between blog posts. (I've been reminded of this by numerous phone calls, emails and texts. :) This is going to be a looong post, because I have a lot of updates!
Holden is doing better today... We still don't really know what's going on with him, but he seems to be improving, and that's the important part. The doctors think the sleepiness and the respiratory issues are two different problems. The sleepiness and lethargy may have been caused by his sedatives, but the question then is what happened to decrease his tolerance all of a sudden to meds he's been on for two months? We're all stumped by that one. They've been tinkering with his sedatives quite a bit, and he was showing some signs of withdrawl this morning... We'll continue to try and wean the meds while keeping him comfortable, which is a fine line. We have a consult with neurology scheduled for tomorrow, and we'll see if they have anything new to add. They'll probably want to do an MRI, which isn't advisable with a pacemaker to begin with. He would also have to be re-intubated for the procedure, so we're looking at that as a very last resort. He's still having tests run as the doctors think of new things, and so far everything is still coming back normal. I'm not a fan of mysteries!
Respiratory-wise, he's doing much better. He's still on oxygen, but just the regular nasal canula support now instead of the Vapotherm. We don't have any ideas on what caused the edema either... So frustrating! His chest xrays still look pretty wet, so we'll continue to watch those pretty closely. Otherwise we just watch and wait, and hope that we can figure out what went wrong, so that we can prevent it from happening again.
Today he's been really active and alert, wanting to play and very happy. It's so exciting to see him awake, and I've missed those sweet smiles. He still tires easily, but he's a pretty happy baby in between. One of the doctors told us earlier today that we may never know what caused his setbacks... I know I should be satisfied and grateful for the fact that he's improving so much, but if we don't find out what happened, I'm going to be a nervous wreck for weeks waiting for the other shoe to drop again.
I was gone for most of the day yesterday, taking the girls back to their Dad's. I love spending time with them, and I'm so thankful that we got to spend some of the holidays with them, but it's always such a sad day for me when I take them back. :( They had so many gifts and bags to take back that even my big Mom bus was PACKED. I'm not sure how I even fit kids in there. I think they had a really good time while they were here though... I tried my best to take them to do something fun each day, so they wouldn't think about sad times in the hospital when they remember this Christmas with us. We went shopping during the day on NYE (at Grapevine Mills mall- I do NOT recommend shopping there on a holiday to any sane person. It was insane!!), then that night we took them to a hotel with a view of downtown Dallas so they could watch the fireworks. They felt very fancy! (Holden had his own little party with the nurses and doctors up here in the room... I'll post pictures.) The next day, we went back to Grapevine Mills to eat at the Rainforest Cafe. We didn't get to eat there the day before as there was an hour and a half long wait... They absolutely loved it. The food was decent, not great, but watching the girls have such a good time made it worth it. Trent's mom and stepdad got us tickets to the ICE show at the Gaylord as a Christmas gift, and that was the highlight of their vacation I think. It was a last minute suggestion, and I'm so glad they thought of it! The girls were fascinated by the whole thing, and talked about it the rest of the day. A giant man fell on Rylie at the top of the slide, but even that didn't dampen her spirits. :)
So that's what kept me too busy to post this weekend... I hope we didn't worry anyone too much. :) I'll put up some pictures later this evening, and maybe that will get me out of trouble?
Monday, January 3, 2011
Friday, December 31, 2010
Day 61
Yesterday was both a really good and really bad day... The girls were here, and we got to do their Christmas (finally!). They had a great time, and I loved being able to spend time with them. I'll post some pictures at some point, when I find my cord to upload them. I'm hoping to take them to do something fun this afternoon, if Holden is stable enough. I want them to have a good time, even in these circumstances.
Unfortunately, Holden has been having some trouble in the middle of everything. He went down for a CT scan yesterday afternoon, and started having more trouble breathing when he was on his way back. It got pretty bad, and we were told they'd have to re-intubate him. We put him back on Vapotherm and VPAP, trying anything to avoid the breathing tube. The doctors weren't terribly optimistic, but over time through the night, he's managed to control his breathing a little more. It looks like we'll be able to get away with not going back on the vent for now. We still have no idea what's happening... Last time he had the flash pulmonary edema, we were able to pinpoint a specific drug that caused it, but we don't have a smoking gun this time. He has all of these symptoms- like the sleepiness, breathing issues, sweating, temp fluctuations, etc.- and he's a total puzzle. His echo didn't show any major changes in function, his CT scan didn't show any major bleeds... We're all stumped. So please pray for Holden and his doctors today... We need to figure out what's going on!
Unfortunately, Holden has been having some trouble in the middle of everything. He went down for a CT scan yesterday afternoon, and started having more trouble breathing when he was on his way back. It got pretty bad, and we were told they'd have to re-intubate him. We put him back on Vapotherm and VPAP, trying anything to avoid the breathing tube. The doctors weren't terribly optimistic, but over time through the night, he's managed to control his breathing a little more. It looks like we'll be able to get away with not going back on the vent for now. We still have no idea what's happening... Last time he had the flash pulmonary edema, we were able to pinpoint a specific drug that caused it, but we don't have a smoking gun this time. He has all of these symptoms- like the sleepiness, breathing issues, sweating, temp fluctuations, etc.- and he's a total puzzle. His echo didn't show any major changes in function, his CT scan didn't show any major bleeds... We're all stumped. So please pray for Holden and his doctors today... We need to figure out what's going on!
Wednesday, December 29, 2010
Day 59
Well, we are officially residents in the CICU again. :( Around midnight last night, Holden started having some issues... His sats continued to drop, he was vomiting more and he had some scary diapers. He was tachypneic (meaning he was working really hard to breathe), his temperature dropped and he was hypothermic, which caused his heart rate to drop as well. He was scary pale, and pouring sweat. The doctors on call for the floor didn't seem to know what to do with him, so the ICU doctors came up and decided to bring him back. His temperature is back up now, and his work of breathing isn't as bad as it was, but he's still lethargic and hard to wake. We have no idea what's going on, and the doctors seem to be stumped as well... All of the tests we've run so far have come back clean. I'm terrified that they'll tell us it's a heart issue, again. If all of the tests and labs come back normal, we'll have to assume that's what it is, and I really don't want to hear that news. He'll have another echo today to see if we can pinpoint anything. Until then, we're just watching and anxiously waiting. We'd really appreciate any extra prayers you can send up for him today!
(And the girls are going to be here tonight... I've been so excited that they finally get to come, and now all of this happens. I so didn't want to be back in the ICU for their visit... We'll make it work though!)
(And the girls are going to be here tonight... I've been so excited that they finally get to come, and now all of this happens. I so didn't want to be back in the ICU for their visit... We'll make it work though!)
Tuesday, December 28, 2010
Day 58
Holden really enjoys keeping us on our toes, and today he decided to test us out again. He slept through most of the night (that alone was a total shock), and he’s slept the rest of the day through as well. This morning, I thought maybe he was just rewarding me for all of the sleepless nights I’ve spent with him in the past. By lunchtime, I was starting to get worried, and now that he’s slept the day away, we’re really concerned. We can only wake him up for short periods of time, and even then he’s lethargic and not himself. His O2 sats were dropping all morning, and his chest xrays were hazier than they have been. That means our little man had to get the dreaded tube put back up his nose. As much as he hates it, the extra oxygen has helped his numbers. (And the nasal canula is better than the breathing tube, any day.) We also got to take another exciting field trip to fluoroscopy to re-place his feeding tube. When he was gagging and throwing up earlier, the tube just started sliding out of his nose… This was the first time that the tube has come out without little man’s help, but the end result was still the same. Placing the tube down there isn’t fun, for any of us, and I hate that he had to go through it again. Even though he’s been asleep for most of it, this has been a rough day for him. The worst part is not knowing what’s really going on with him… We have no idea what the problem is, and it’s so incredibly frustrating not having a plan in place to fix what ails him. It's hard not to be eaten alive with the frustration.
But whenever I start to get too frustrated or upset, something happens that reminds me again how blessed we are to even be on this journey. Another couple lost their baby today, after only knowing him for a few short days. There are many who would do anything to have my worries. Instead, they only had their babies for a few hours, days or months. I think that thought and say a pray of thanks to accompany it every time. Yes, we’re back on oxygen. And we’re on our way back to an operating room at some point, either for another surgery or a transplant. But Holden hasn't given up, and we haven't either.
For a short time, I’ve been able to forget all of the nasty things ahead and focus on my baby instead. I was able to leave the fear behind and think of all miracles we’ve already witnessed, all of the answered prayers. I felt that familiar fear again today- the fear I thought was behind us, at least for a little while. But as awful as it is to feel that fear again, it’s good sometimes to be reminded of the contrast between fear and faith. They are opposites. They can’t exist in the same heart. I choose faith.
But whenever I start to get too frustrated or upset, something happens that reminds me again how blessed we are to even be on this journey. Another couple lost their baby today, after only knowing him for a few short days. There are many who would do anything to have my worries. Instead, they only had their babies for a few hours, days or months. I think that thought and say a pray of thanks to accompany it every time. Yes, we’re back on oxygen. And we’re on our way back to an operating room at some point, either for another surgery or a transplant. But Holden hasn't given up, and we haven't either.
For a short time, I’ve been able to forget all of the nasty things ahead and focus on my baby instead. I was able to leave the fear behind and think of all miracles we’ve already witnessed, all of the answered prayers. I felt that familiar fear again today- the fear I thought was behind us, at least for a little while. But as awful as it is to feel that fear again, it’s good sometimes to be reminded of the contrast between fear and faith. They are opposites. They can’t exist in the same heart. I choose faith.
Monday, December 27, 2010
Day 57
We have quite a few updates today, both good and bad... My ex-husband texted yesterday morning and said that he and the girls were running fevers and sick. They went to the weekend clinic, and they have the flu. Kaitlyn also has an ear infection. They were still running fevers this morning, so it doesn't look like they're going to pass through it very quickly. :( The girls are so upset about not being able to come up here, but we can't take the chance of them infecting anyone else. No matter how careful they are, they can still pass it on, and there are too many sick babies here to take that risk. They're both devastated, and I am too. :( They go back to school next week, so I'm praying they feel better at least by the weekend. I'm determined to see them before they go back to school, no matter what!
In other news, we got moved to the 8th floor this afternoon. We were told to go ahead and settle in, and not get too excited about going home, as we're still here for the long haul. It's hard not to be excited about the move though, since it is still a step in the right direction- out of the ICU! He had a much better day today than the past couple of days, and he's been in a pretty good mood... He even got to eat a little bit earlier while speech therapy was working with him. He had peaches, applesauce and graham crackers. (Tiny bites of all of them, but it's a start!) We'll have to continue working with him, because he's still very gaggy with anything taken by mouth, but I'm really excited about the fact that we're beginning the process.
We've noticed a few pros and cons to being on the 8th floor already... We can have food and drinks in the room, which I'm a huge fan of. I've gotten really tired of drinking hot bottled cokes, and I am loving drinking my drinks- over ice, with a straw!- in the room. We don't have to take turns going to eat now, and that's a plus as well. We also have a bathroom in the room here, so no more nasty public showers! It's the little things that make me happy.
Things that don't make me happy include the fact that I've had to stop nursing. He hasn't really nursed since he's been here, but I've been pumping for two months with the hope that he would resume nursing once he got off of the vent. With all of his eating issues, that's not a possibility anymore. They have so much milk saved up from the past two months that we've had to send some of it home with relatives, so he'll at least continue to get my milk... I'm just a little sad that our nursing ended so abruptly like this.
I'm also a little unhappy about some other things, but they're small things when I look at the big picture. His eyes seem to be turning brown, which I was so hoping wouldn't happen! (I was actually surprised that they hadn't turned brown before this, seeing how much he takes after his dad otherwise, but I was really hoping he'd keep his blue eyes.) They're beautiful eyes regardless, and I'm so happy to see them open that I shouldn't complain at all. :)
And Starbucks has discontinued the Caramel Brulee Latte that I've been living on for the past two months... Very depressing. They've tried to pass off a couple of other drinks as being similar, but they evidently lie. ;) I'll have time to find a new drink before we leave, unfortunately...
But to keep things in perspective, no matter how much longer we have to stay here, we are so grateful with the progress he's made. We pray endlessly for continued progress, and we very much appreciate all of you who continue to pray with us!
In other news, we got moved to the 8th floor this afternoon. We were told to go ahead and settle in, and not get too excited about going home, as we're still here for the long haul. It's hard not to be excited about the move though, since it is still a step in the right direction- out of the ICU! He had a much better day today than the past couple of days, and he's been in a pretty good mood... He even got to eat a little bit earlier while speech therapy was working with him. He had peaches, applesauce and graham crackers. (Tiny bites of all of them, but it's a start!) We'll have to continue working with him, because he's still very gaggy with anything taken by mouth, but I'm really excited about the fact that we're beginning the process.
We've noticed a few pros and cons to being on the 8th floor already... We can have food and drinks in the room, which I'm a huge fan of. I've gotten really tired of drinking hot bottled cokes, and I am loving drinking my drinks- over ice, with a straw!- in the room. We don't have to take turns going to eat now, and that's a plus as well. We also have a bathroom in the room here, so no more nasty public showers! It's the little things that make me happy.
Things that don't make me happy include the fact that I've had to stop nursing. He hasn't really nursed since he's been here, but I've been pumping for two months with the hope that he would resume nursing once he got off of the vent. With all of his eating issues, that's not a possibility anymore. They have so much milk saved up from the past two months that we've had to send some of it home with relatives, so he'll at least continue to get my milk... I'm just a little sad that our nursing ended so abruptly like this.
I'm also a little unhappy about some other things, but they're small things when I look at the big picture. His eyes seem to be turning brown, which I was so hoping wouldn't happen! (I was actually surprised that they hadn't turned brown before this, seeing how much he takes after his dad otherwise, but I was really hoping he'd keep his blue eyes.) They're beautiful eyes regardless, and I'm so happy to see them open that I shouldn't complain at all. :)
And Starbucks has discontinued the Caramel Brulee Latte that I've been living on for the past two months... Very depressing. They've tried to pass off a couple of other drinks as being similar, but they evidently lie. ;) I'll have time to find a new drink before we leave, unfortunately...
But to keep things in perspective, no matter how much longer we have to stay here, we are so grateful with the progress he's made. We pray endlessly for continued progress, and we very much appreciate all of you who continue to pray with us!
Saturday, December 25, 2010
Day 55- Christmas
The first part of our Christmas has actually gone pretty well, considering we're in the ICU and not at home... The hospital really does try and make the holiday as special as possible for the kids in here. Holden got a visit from Santa this morning, which went better than expected... He didn't exactly smile at him, but he didn't scream in terror either. I'm going to mark that experience as a success. :)
I don't have much to report as far as medical progress... Holden hasn't been feeling his best today. He's been really sick to his stomach (both ends, poor baby), and he hasn't been his happy self today. We don't know if it's withdrawl from the sedation meds and methadone, reaction to the increased feeds going to the top part of his intestines instead of the lower, or maybe even the stupid pancreatitis again. We were going to try and start working with him to take small amounts orally, just to get him back in the habit, but that's on hold again. :( Whatever it is, I want it to go away so my sweet boy can enjoy his first Christmas!
We'll have the second part of our Christmas (our "real" Christmas, as far as the girls are concerned) when the girls get here tomorrow... Until then, I've taken a bazillion pictures. Enjoy, and have a Merry Christmas!! :)
I don't have much to report as far as medical progress... Holden hasn't been feeling his best today. He's been really sick to his stomach (both ends, poor baby), and he hasn't been his happy self today. We don't know if it's withdrawl from the sedation meds and methadone, reaction to the increased feeds going to the top part of his intestines instead of the lower, or maybe even the stupid pancreatitis again. We were going to try and start working with him to take small amounts orally, just to get him back in the habit, but that's on hold again. :( Whatever it is, I want it to go away so my sweet boy can enjoy his first Christmas!
We'll have the second part of our Christmas (our "real" Christmas, as far as the girls are concerned) when the girls get here tomorrow... Until then, I've taken a bazillion pictures. Enjoy, and have a Merry Christmas!! :)
Friday, December 24, 2010
Day 54
It's Christmas Eve, and Holden's already gotten one of his gifts- just a little early. We loaded up IV's and portable monitors in a wagon and set out to look at the trains. We took him for a spin around the unit first, to make sure he would be stable enough for the big trip downstairs. Along the way, we saw most of his fan club (consisting of doctors, nurses, NP's and techs), and he charmed everyone with his sweet grin. He was pretty happy to be out of his room... I would be too, after spending two months within the same four walls! His reaction to the trains was more wide-eyed wonder than smiles, but he had probably forgotten there was a world outside of room 3. :)
He continues to do well without respiratory support, but he still has digestive issues. He's gagging and throwing up, and having really loose stools. We're still pushing forward with the feeds (which are going ND now, thanks to Holden's helpful assistance last night), and we're just going to keep pushing until he becomes symptomatic again. Which hopefully won't happen... I'm about ready to blow this popsicle stand!
One of the doctors, Dr. Clay, brought Christmas dinner in for the families here tonight. While I probably won't actually eat any of the food (since Holden has once again boycotted sleep), I still think that is so incredibly generous of him. It just shows again how caring and kindhearted the people who work here are. We are amazingly lucky to have this team working with us to get our baby back.
I can't believe that Christmas is really here, and we are still here... I never saw this coming when we checked in for his surgery so many weeks ago. Honestly, I'm ready for a new year. This year has been a roller coaster of the highest highs and the lowest lows, and we're ready to get off the ride now. I try to remind myself daily of one of the most important lessons learned- Perspective is everything. I have two beautiful daughters who are smart and funny and kind. My son is alive and recovering, even if slowly. And someday, whether it is next week or next month or next year, we will get to take him home. WE ARE BLESSED. The coming year will be a year of continued miracles. Of changes, and victories. Of JOY. I'll look for it everywhere, in everything I do, every day. Because you usually get what you expect out of life, right? :)
He continues to do well without respiratory support, but he still has digestive issues. He's gagging and throwing up, and having really loose stools. We're still pushing forward with the feeds (which are going ND now, thanks to Holden's helpful assistance last night), and we're just going to keep pushing until he becomes symptomatic again. Which hopefully won't happen... I'm about ready to blow this popsicle stand!
One of the doctors, Dr. Clay, brought Christmas dinner in for the families here tonight. While I probably won't actually eat any of the food (since Holden has once again boycotted sleep), I still think that is so incredibly generous of him. It just shows again how caring and kindhearted the people who work here are. We are amazingly lucky to have this team working with us to get our baby back.
I can't believe that Christmas is really here, and we are still here... I never saw this coming when we checked in for his surgery so many weeks ago. Honestly, I'm ready for a new year. This year has been a roller coaster of the highest highs and the lowest lows, and we're ready to get off the ride now. I try to remind myself daily of one of the most important lessons learned- Perspective is everything. I have two beautiful daughters who are smart and funny and kind. My son is alive and recovering, even if slowly. And someday, whether it is next week or next month or next year, we will get to take him home. WE ARE BLESSED. The coming year will be a year of continued miracles. Of changes, and victories. Of JOY. I'll look for it everywhere, in everything I do, every day. Because you usually get what you expect out of life, right? :)
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