Dec 29, 2011
Ooops
Ooopps... Guess I left many of you hanging. We did get to take manny home on Wednesday! This is a huge praise report. God is good and faithful and merciful. Never forget that.
It is strange to re enter your life after a month. It is amazing how many things you miss out on while life is on hold in the hospital. I am a bit overwhelmed by the generosity that was shown to us... Presents, money, the iPad, visitors, meals, etc. My mother in law even came down foe almost two weeks to cook and clean and help while the kids were on spring break. We couldn't have done it without everyone's help.
Regarding manny... This battle is FAR from over. His immediate infection is gone ... Praise God. But the residual effects are still to be determined. Bone marrow suppression/failure is our biggest concern right now... Those are the numbers that are declining... Sigh. We are being followed by a hematologist oncologist. His hemoglobin is dangerously low and dropping as is his hematocrit. What does that mean? I was taught what to watch for and I have my hospital bag still packed.
The next battle for him iss the oneida have mentioned several times. We need a reliable, safe source of food for him. With the TPN, we run the risks of more infections like this one and the possibility of running out of viable veins. With feeding him via tube, he runs the risk of heart attack and respiratory failure, etc. So clearly, we Ned a better, safer option. So back to the drawing board.
Me? After getting home, I ended ip having a good cry. The terror and trauma that manny and we went through is unimaginable. The wounds are deep and only god can/will heal those, but it will take time, especially considering this is not over. And the othe thing that is troubling me is the sacrifice my other kids are making... It is HUGE.
We are spending the days doing fun, family things, building memories, strengthening relationships, cherishing the time.
We are taking one day at a time, trying to find the new rhythm of our lives.
Manny and I are thrilled to be home and on to our next adventure. We would love for it not to involve the hospital any time soon. (but of course we know that can't be true sinc he will have to have his Piccadilly line replaced eventually and that isn't as easy as that sounds... Will write about it another time.)
In the meantime, picture us out having fun, living life.
Eternally grateful for all of you.
Dec 27, 2011
The discharge hiccup
What's the latest on us?
I will try to recap.
December 28 will be the14th day of antifungals SINCE the negative blood cultures. The discharge plan is to go home then. But ... on the 26th, they ran the standard weekly CBC required when a patient is on TPN and ...
Let's just say there are some concerning numbers. Several indicators (that have been stable for the whole 2 weeks) are now trending downward. I spent most of the 26th researching what this could mean and if it would impact our departure.
Long story short: Yes. It could.
Today, I talked to Doc and he is concerned too. The nurses were coming up will all sorts of (unplausable) explanations of why/how this could be a false reading. To which Doc said, 'Yes, let's get some sand for our heads.' I asked him point blank if we're going home tomorrow and he said, "I think so... even if it's only for a few days." (Did you all catch that?? Ugh)
Without going into CBC reading 101 class, he is borderline needing a blood transfusion again. I have no problem with him getting one. The question is ... WHY is he needing it? I don't even want to go into all the things that this could indicate ... suffice to say, NONE are good. Among the likely culprits: Infection brewing, sepsis, bone marrow insufficiency. The concerning part is that he was stable for 2 plus weeks and then this sudden drop.
So, in the morning, we're doing the blood test. If the numbers have gone down, we're continuing to be residents of room 221. If the numbers are stable, this is gray area and he'll have to make the call about discharge by involving the Infectious Diseases Doc and the Hematologist. They'll make their best guess as to what is going on and what to do about it. (Some things are chronic, for example, and those shouldn't keep us here.)
But, if by miracle, his numbers have rebounded ... we get to go home. Hopefully for some time.
So, dear ones, we're needing another miracle. As he sleeps tonight, he needs a Godly blood transfusion. To give him all the life sustaining things his body needs to fight whatever this is off. We will know by about 7am and we'll go from there.
I've just been talking with the night nurse who will do the blood draw and should have results before she leaves. If the number has gone down, she will wake me up to tell me. If it's stable or up, I will get to sleep for a few more minutes.
Trying not to let my brain go to anything other than ... he is doing well. he is stable. he is coming home. Let's all chant that together, shall we?
I will try to recap.
 |
| "My view"... he was in my lap and looked up at me. I snapped this picture. |
December 28 will be the14th day of antifungals SINCE the negative blood cultures. The discharge plan is to go home then. But ... on the 26th, they ran the standard weekly CBC required when a patient is on TPN and ...
Let's just say there are some concerning numbers. Several indicators (that have been stable for the whole 2 weeks) are now trending downward. I spent most of the 26th researching what this could mean and if it would impact our departure.
Long story short: Yes. It could.
Today, I talked to Doc and he is concerned too. The nurses were coming up will all sorts of (unplausable) explanations of why/how this could be a false reading. To which Doc said, 'Yes, let's get some sand for our heads.' I asked him point blank if we're going home tomorrow and he said, "I think so... even if it's only for a few days." (Did you all catch that?? Ugh)
Without going into CBC reading 101 class, he is borderline needing a blood transfusion again. I have no problem with him getting one. The question is ... WHY is he needing it? I don't even want to go into all the things that this could indicate ... suffice to say, NONE are good. Among the likely culprits: Infection brewing, sepsis, bone marrow insufficiency. The concerning part is that he was stable for 2 plus weeks and then this sudden drop.
So, in the morning, we're doing the blood test. If the numbers have gone down, we're continuing to be residents of room 221. If the numbers are stable, this is gray area and he'll have to make the call about discharge by involving the Infectious Diseases Doc and the Hematologist. They'll make their best guess as to what is going on and what to do about it. (Some things are chronic, for example, and those shouldn't keep us here.)
But, if by miracle, his numbers have rebounded ... we get to go home. Hopefully for some time.
So, dear ones, we're needing another miracle. As he sleeps tonight, he needs a Godly blood transfusion. To give him all the life sustaining things his body needs to fight whatever this is off. We will know by about 7am and we'll go from there.
I've just been talking with the night nurse who will do the blood draw and should have results before she leaves. If the number has gone down, she will wake me up to tell me. If it's stable or up, I will get to sleep for a few more minutes.
Trying not to let my brain go to anything other than ... he is doing well. he is stable. he is coming home. Let's all chant that together, shall we?
Dec 25, 2011
A Perfect Day
The day was ... perfect.
I guess I didn't have any high expectations of the day, afterall, what can we do for such a short amount of time and a "sick" baby on Christmas day when nothing is open?
The night had been uneventful, just a few times rotating Manny. Then the staff helpers delivered a few toys in the middle of the night. Manny and Kaley opened the few gifts that were given to us by the hospital and we played with them. We did our normal routine of medicines, breathing treatments, etc.
My parents came to visit and brought breakfast.
About noon Dan showed up. I told Manny the plan was to go with Daddy and the kids, have some fun, and then back to the hospital. He immediately cried and said, "Home, no hostipal." I explained again. Same response.
My heart sank as I knew he'd have a blast and then feel crushed that he had to come back here and not stay with Daddy and the kids and go home. But we felt it was worth it anyway. So we went.
He was sooo excited to see the kids, get in his car seat. He was pointing out all the signs along the road. He was even like, "Cooool ... look at the cars". It's truly amazing what you SEE that you didn't see before.
We drove to this little "beach" along Tampa Bay just a few minutes from the hospital. The day was perfect. Sunny. 82 degrees. And we just started to walk. The kids have grown up in Florida and have saltwater in their veins practically. They love the adventure of turning over rocks and finding life, looking for crabs and other creatures. We skipped rocks into the bay.
A couple of times I mentioned to Manny that eventually we would have to go back to the hospital. Each time, his answer was the same, "No hostipal, home."
Eventually it was time to walk back. More adventures along the way. Piled into the car and headed to Burger King to get some ice cream. And we just hung out. Talked. Laughed. All the while realizing the clock was ticking.
And then it was time.
I can't put into words why this is sooo hard.
I'm stuck between two worlds.
And I was dreading what I thought was coming from Manny.
Kaley, Manny and I walked to the front door of the hospital. I carried him and Kaley pushed his wheelchair. We turned around and waved good bye. "See you soon" I said in a chipper voice. Manny started to cry but didn't. Instead, he said, "See you soon, guys."
Up the elevator. Down the hall. Hi to all the nurses. Into our room. No tears.
I felt relief. I have no clue why he was OK with coming back here tonight, but he was. Perhaps that was God's gift of grace to me. We returned him to his hospital clothes, hooked him up to his meds and life resumed at the hospital.
Since he was good and settled, I went into the bathroom and had a good cry. I miss my family so much. I know how hard this is on them. I see it on their faces. They're trying to be brave and strong. I see it in the little details that only a mom notices. They lost sooooo much this past month. And they understand, they get to keep their brother. And they don't even resent him. They think he's worth it too. And I'm in awe of the sacrifice that my little people are willing/able to make at such a young age.
About this time, I get a call from Dan that Zoe is having a hard time. She's refusing to do something that was asked of her. (She has deep, deep "loss" issues and they often manifest in behaviors of defiance and/or anger.) So Dan called me to see if I could talk her down. I could hear her yelling. She got on the phone and I said, "What is going on?!" And she burst into tears, "I MISS YOU!!!" And we wept together. I can't tell you the guilt there is to have her in so much pain. So I put her together with a proverbial bandaid and hope that it will be enough.
I came out of the bathroom and Kaley could tell I'd been crying. She said, "Want to watch a movie with me?" (She NEVER does that.) And I said, "Honey, thanks for being a friend tonight. I'm feeling sad and what I need right now is a friend. Thanks for understanding that." And we watched a movie, ate popcorn and shared a coke. It was just what I needed.
So I started out by saying it was the perfect day. How could THIS be the perfect day? I tell you this: Any day that you get to wake up, get to spend time with those you love ... it's a perfect day. Most people do this every day and think NOTHING of it. But today, I am keenly aware of the amazing GIFT that this is. I got to have 6 hours with my family. And the coolest part? That was just a "down payment" ... I'll get to have them all the time again very soon.
What gifts did YOU receive today? They might not have come wrapped with a bow, but they were important. Make sure you didn't miss any.
I guess I didn't have any high expectations of the day, afterall, what can we do for such a short amount of time and a "sick" baby on Christmas day when nothing is open?
The night had been uneventful, just a few times rotating Manny. Then the staff helpers delivered a few toys in the middle of the night. Manny and Kaley opened the few gifts that were given to us by the hospital and we played with them. We did our normal routine of medicines, breathing treatments, etc.
My parents came to visit and brought breakfast.
About noon Dan showed up. I told Manny the plan was to go with Daddy and the kids, have some fun, and then back to the hospital. He immediately cried and said, "Home, no hostipal." I explained again. Same response.
My heart sank as I knew he'd have a blast and then feel crushed that he had to come back here and not stay with Daddy and the kids and go home. But we felt it was worth it anyway. So we went.
He was sooo excited to see the kids, get in his car seat. He was pointing out all the signs along the road. He was even like, "Cooool ... look at the cars". It's truly amazing what you SEE that you didn't see before.
We drove to this little "beach" along Tampa Bay just a few minutes from the hospital. The day was perfect. Sunny. 82 degrees. And we just started to walk. The kids have grown up in Florida and have saltwater in their veins practically. They love the adventure of turning over rocks and finding life, looking for crabs and other creatures. We skipped rocks into the bay.
We walked and ended up at this restaurant on the water and it was open. So we decided it would be our lunch. Quite the view. Food was good. And we just all enjoyed a "normal" moment. And it was at THAT moment, that I started to feel all we've been missing out on. Just how much our lives have been completely on hold. Worth it, of course, but this has been HARD. I only let myself feel that for a split second and I snapped myself out of it. I hadn't realized how "jail-like" this felt. So I couldn't dwell on it.
A couple of times I mentioned to Manny that eventually we would have to go back to the hospital. Each time, his answer was the same, "No hostipal, home."
Eventually it was time to walk back. More adventures along the way. Piled into the car and headed to Burger King to get some ice cream. And we just hung out. Talked. Laughed. All the while realizing the clock was ticking.
 |
| That was then (December 23, 1994... 2 days before we were married on the beach) |
 |
| Happy 17th Anniversary! A perfect way to spend it ... on the beach. |
By now the sun had set and the feeling was very somber. I asked them just to drop us off at the front and not walk us in. As I unloaded the baby out of the van, I was choking back tears. (They flow again as I type this... which is why it's taken me 5 hours to write this since I left them.)
I can't put into words why this is sooo hard.
I'm stuck between two worlds.
And I was dreading what I thought was coming from Manny.
Kaley, Manny and I walked to the front door of the hospital. I carried him and Kaley pushed his wheelchair. We turned around and waved good bye. "See you soon" I said in a chipper voice. Manny started to cry but didn't. Instead, he said, "See you soon, guys."
Up the elevator. Down the hall. Hi to all the nurses. Into our room. No tears.
I felt relief. I have no clue why he was OK with coming back here tonight, but he was. Perhaps that was God's gift of grace to me. We returned him to his hospital clothes, hooked him up to his meds and life resumed at the hospital.
Since he was good and settled, I went into the bathroom and had a good cry. I miss my family so much. I know how hard this is on them. I see it on their faces. They're trying to be brave and strong. I see it in the little details that only a mom notices. They lost sooooo much this past month. And they understand, they get to keep their brother. And they don't even resent him. They think he's worth it too. And I'm in awe of the sacrifice that my little people are willing/able to make at such a young age.
About this time, I get a call from Dan that Zoe is having a hard time. She's refusing to do something that was asked of her. (She has deep, deep "loss" issues and they often manifest in behaviors of defiance and/or anger.) So Dan called me to see if I could talk her down. I could hear her yelling. She got on the phone and I said, "What is going on?!" And she burst into tears, "I MISS YOU!!!" And we wept together. I can't tell you the guilt there is to have her in so much pain. So I put her together with a proverbial bandaid and hope that it will be enough.
I came out of the bathroom and Kaley could tell I'd been crying. She said, "Want to watch a movie with me?" (She NEVER does that.) And I said, "Honey, thanks for being a friend tonight. I'm feeling sad and what I need right now is a friend. Thanks for understanding that." And we watched a movie, ate popcorn and shared a coke. It was just what I needed.
So I started out by saying it was the perfect day. How could THIS be the perfect day? I tell you this: Any day that you get to wake up, get to spend time with those you love ... it's a perfect day. Most people do this every day and think NOTHING of it. But today, I am keenly aware of the amazing GIFT that this is. I got to have 6 hours with my family. And the coolest part? That was just a "down payment" ... I'll get to have them all the time again very soon.
What gifts did YOU receive today? They might not have come wrapped with a bow, but they were important. Make sure you didn't miss any.
Dec 24, 2011
You're Listening?
So it's Saturday night and it hits me ... I haven't updated the blog. Truth is, not a ton happening. (Which is GREAT news by the way.) But there are some things that I can catch you up on.
Friday ... boring, "normal" kind of day. Manny is being "himself" pretty much all the time. Happy, fun, funny, opinionated, social, interactive.
The plan had been to make sure he has an adequate "line" before the IV team leaves for the weekend. So about 5pm, Mani (from the IV team) brings in the equipment to see if she can get a PICC line. That's the one that's in the upper arm and is a central line. This means he can eventually go home and go back to his home feeds. (You can't do that with a peripheral IV line.) Remember back on Monday they tried FIVE times and couldn't get it? Well, she thought she could. So we decided to give it a try.
About 7:30, we headed back. Manny was given a light sedative (versed) and he was still awake and talking but he started being really "loosey-goosey" and even slurring his words! By the end, he was snoring.
But in the middle, God just made it "easy" or something. Because it worked. It was flawless. Easy. After all that torture the other day and then now, drama-free! (Gotta love that.)
Headed back to the room and we had surprise visitors ... Dan, the kids and Grandma. Kaley was there to stay with me again (HER decision). Manny slept through the whole visit.
Today, has been quite uneventful. (Love that). We had visitors bring bears and a Hess truck and bead to Kaley and Manny. (Not sure which group it was but they were here for all the kids in the hospital.)
Somewhere in the afternoon, I noticed most of the kids on our floor have been discharged. We're in a unit that often takes the kids post surgery (and most docs didn't do those near Christmas time).
Then some dear friends, Rich and Elsa, came to visit. They brought veggies for me (yay) and a few toys for Manny. It's always nice to have grown ups to talk to. Just as they were leaving, another visitor came by. Rick ... he's a friend with Rich and Elsa. I've met him once but it's been a while. Apparently, he's been reading the blog. Who knew. And I can't begin to tell you how much it means to know someone is reading and benefiting and being blessed by the blog. We ended up talking about a variety of spiritual topics and before you know it, time had flown. He became that "word fitly spoken" referenced in the book of Proverbs.
Sometimes I feel like I'm just typing these things so I have a way to express what I'm feeling/experiencing. It helps keep my details straight and even helps me to go back over it later to remember it DID happen. (Otherwise it seems like a bad dream sometimes.) But to know that people are actually reading, well... it's quite humbling. I feel like these are the random ramblings of a tired lady who is just trying to put one foot in front of the other most days.
There are times I'm feeling triumphant. Other times it's distraught. Sometimes I'm completely overwhelmed. Other times, it's victorious. And there are times I feel like all those simultaneously.
I always wonder if I'm "over sharing" (where it's just too much... yes, I know bloggers like that.) or "under sharing" (where you are lost because I haven't told enough relevant details). But mostly, I am not considering my reader (ooops, how's that for blunt?) I'm just writing.
So I guess it's time I thanked you. If you're a reader of my "reflections" ... thanks. Thanks for hanging in there with me through the thick and thin. For being faithful to raise us up in prayer (Like Aaron and Hur did for Moses ... and no, not comparing myself with Moses). For the comments of encouragement you leave me. For listening.
Right now ... we're in a "semi-safe" place again with Manny. We can almost breathe again. (Though it's been almost scary to exhale.) We're in a time of regrouping and wondering what the next steps are. (I should know more Monday about the time line from here now that we have a line.)
And I'm trying not to think beyond one day at a time.
Friday ... boring, "normal" kind of day. Manny is being "himself" pretty much all the time. Happy, fun, funny, opinionated, social, interactive.
The plan had been to make sure he has an adequate "line" before the IV team leaves for the weekend. So about 5pm, Mani (from the IV team) brings in the equipment to see if she can get a PICC line. That's the one that's in the upper arm and is a central line. This means he can eventually go home and go back to his home feeds. (You can't do that with a peripheral IV line.) Remember back on Monday they tried FIVE times and couldn't get it? Well, she thought she could. So we decided to give it a try.
About 7:30, we headed back. Manny was given a light sedative (versed) and he was still awake and talking but he started being really "loosey-goosey" and even slurring his words! By the end, he was snoring.
But in the middle, God just made it "easy" or something. Because it worked. It was flawless. Easy. After all that torture the other day and then now, drama-free! (Gotta love that.)
Headed back to the room and we had surprise visitors ... Dan, the kids and Grandma. Kaley was there to stay with me again (HER decision). Manny slept through the whole visit.
Today, has been quite uneventful. (Love that). We had visitors bring bears and a Hess truck and bead to Kaley and Manny. (Not sure which group it was but they were here for all the kids in the hospital.)
Somewhere in the afternoon, I noticed most of the kids on our floor have been discharged. We're in a unit that often takes the kids post surgery (and most docs didn't do those near Christmas time).
Then some dear friends, Rich and Elsa, came to visit. They brought veggies for me (yay) and a few toys for Manny. It's always nice to have grown ups to talk to. Just as they were leaving, another visitor came by. Rick ... he's a friend with Rich and Elsa. I've met him once but it's been a while. Apparently, he's been reading the blog. Who knew. And I can't begin to tell you how much it means to know someone is reading and benefiting and being blessed by the blog. We ended up talking about a variety of spiritual topics and before you know it, time had flown. He became that "word fitly spoken" referenced in the book of Proverbs.
Sometimes I feel like I'm just typing these things so I have a way to express what I'm feeling/experiencing. It helps keep my details straight and even helps me to go back over it later to remember it DID happen. (Otherwise it seems like a bad dream sometimes.) But to know that people are actually reading, well... it's quite humbling. I feel like these are the random ramblings of a tired lady who is just trying to put one foot in front of the other most days.
There are times I'm feeling triumphant. Other times it's distraught. Sometimes I'm completely overwhelmed. Other times, it's victorious. And there are times I feel like all those simultaneously.
I always wonder if I'm "over sharing" (where it's just too much... yes, I know bloggers like that.) or "under sharing" (where you are lost because I haven't told enough relevant details). But mostly, I am not considering my reader (ooops, how's that for blunt?) I'm just writing.
So I guess it's time I thanked you. If you're a reader of my "reflections" ... thanks. Thanks for hanging in there with me through the thick and thin. For being faithful to raise us up in prayer (Like Aaron and Hur did for Moses ... and no, not comparing myself with Moses). For the comments of encouragement you leave me. For listening.
Right now ... we're in a "semi-safe" place again with Manny. We can almost breathe again. (Though it's been almost scary to exhale.) We're in a time of regrouping and wondering what the next steps are. (I should know more Monday about the time line from here now that we have a line.)
And I'm trying not to think beyond one day at a time.
Dec 22, 2011
Manny's Fun Day
The night was uneventful. Just about 6 times of turning him. No drama.
My mom and dad came by with some breakfast and to visit. (Always nice to have adults to talk with!) They hung out until it was lunchtime and I grabbed some food for lunch/dinner. Since Kaley isn't here for me to leave easily, I thought I'd get food while I had the chance.
Julie, the music lady, came for another play date.
Then the Child Life lady asked if we wanted to play BINGO by watching on channel 14. Sure, why not? But unfortunately, we don't get that channel. Oh well. About an hour later, they showed up and said that Manny won anyway. He got a new remote controlled bulldozer.
AND they had a raffle of all the kids playing and Manny was the winner of the Grand Prize! A HUGE teddy bear which he named Joe. This thing is bigger than he is for sure!
Then it was time for PlayDoh. I think this last one could be an Ad for PlayDoh!
I'm having people ask if these pics are really showing Manny feeling better. And yes, he's HIMSELF! He's back 99% I'd say. No longer sick. No grumpy. Easy to get along with. Cooperative. Learning. Playing. You know, "Manny".
How's THAT for a miracle?
My mom and dad came by with some breakfast and to visit. (Always nice to have adults to talk with!) They hung out until it was lunchtime and I grabbed some food for lunch/dinner. Since Kaley isn't here for me to leave easily, I thought I'd get food while I had the chance.
Julie, the music lady, came for another play date.
Then the Child Life lady asked if we wanted to play BINGO by watching on channel 14. Sure, why not? But unfortunately, we don't get that channel. Oh well. About an hour later, they showed up and said that Manny won anyway. He got a new remote controlled bulldozer.
AND they had a raffle of all the kids playing and Manny was the winner of the Grand Prize! A HUGE teddy bear which he named Joe. This thing is bigger than he is for sure!
Then it was time for PlayDoh. I think this last one could be an Ad for PlayDoh!
I'm having people ask if these pics are really showing Manny feeling better. And yes, he's HIMSELF! He's back 99% I'd say. No longer sick. No grumpy. Easy to get along with. Cooperative. Learning. Playing. You know, "Manny".
How's THAT for a miracle?
Dec 21, 2011
Got an answer to prayer
Gotta love how prayers are answered in direct, quick ways. I went to bed last night wondering which way to go regarding Manny's IV versus PICC versus Broviac issue.
By the time Manny went to bed, his arm was hurting at the IV site and starting to swell. But the way he is with IVs, we don't pull them unless absolutely necessary. We figured it would last until morning. But by 3am, it was clear, he was in a lot of pain. They turned off the fluids going into his arm and called the doc.
At 5am, he had been up so many times crying in pain, that they pulled the IV and took a blood glucose just to make sure he doesn't plummet (like last time) and it was fine. At 8am, it was sinking. By 9:30, it was quite low so they called the IV team to do an emergency IV line. (PICCs aren't done until the afternoon usually around here and he couldn't wait that long.)
IV got in ... eventually.
So by the time the docs rounded today, we were discussing the option of skipping the PICC altogether. Instead, we will try to do the Broviac next Monday or Tuesday. (That way, he'll be at the very tail end of his treatment and the least likely to get reinfected.)
So now we wait to see if it can hang in there or not with his IVs. The longer we can go, the better.
Tonight, the kids, Dan and Dan's Mom Came by. She brought me some homemade stew and a nice salad. (Yum). The kids had fun playing the Manny's toys! And at the end, I sent Kaley home with them. She was TORN, oh so torn about staying or going. So I ended up pushing her to go. (Even still she was still torn.) But I know how much good it will do her, even though MY life gets harder. She needs to get out of these 4 walls. She needs to run and play and have some fun. She needs to get frush air and sunshine. She needs to hug on her cats, feed her lizard, sleep without a baby crying and machines beeping and noisy nurses. She deserves a life outside of the hospital. I HAVE to be here, she doesn't. But even still, she cried on the way down the hallway. She'll be fine. And she made Daddy promise he'd bring her back on Friday.
I miss her already.
I have wondered why we have been granted all this "special" time together. We've certainly bonded in a special and unique way. I often wonder what will come of these past 4 months where we have spent more time IN the hospital than OUT of the hospital. I did the math ... 68 days IN the hospital and 53 days OUT of the hospital since September ... and for November, we were only in the hospital for 4 days so that tells you how long our stretches are. And she has been with me for MOST of those days.
I'm thankful for the amazing, beautiful, funny, caring, loving, gifted daughter that God has granted to me. She is certainly a special gift, a real blessing.
So here's hoping that tonight is uneventful. That we're able to get a decent night sleep. Afterall, I'm tired, feverish, still have that very sore throat and am feeling every bone in my body. Both my mother and mother in law have offered to come stay with him... and even though it's tempting, THIS is where I need to be. I've just caught too many things that put his life in jeopardy to feel safe leaving. Maybe I just have a "savior" complex or an over inflated view of what I am doing ... maybe I need to let go of some of the control. But the truth is ... I also don't feel a "release" to be able to leave him.
And besides, if I went home, I'd just find children who need parenting, clothes that need washing, dishes that need to be done, work, work, work. It would be VERY hard not to jump right in to housework and trying to catch up on what I've missed for the past almost month we've been here. Soo ... might as well stay put.
By the time Manny went to bed, his arm was hurting at the IV site and starting to swell. But the way he is with IVs, we don't pull them unless absolutely necessary. We figured it would last until morning. But by 3am, it was clear, he was in a lot of pain. They turned off the fluids going into his arm and called the doc.
At 5am, he had been up so many times crying in pain, that they pulled the IV and took a blood glucose just to make sure he doesn't plummet (like last time) and it was fine. At 8am, it was sinking. By 9:30, it was quite low so they called the IV team to do an emergency IV line. (PICCs aren't done until the afternoon usually around here and he couldn't wait that long.)
IV got in ... eventually.
So by the time the docs rounded today, we were discussing the option of skipping the PICC altogether. Instead, we will try to do the Broviac next Monday or Tuesday. (That way, he'll be at the very tail end of his treatment and the least likely to get reinfected.)
So now we wait to see if it can hang in there or not with his IVs. The longer we can go, the better.
Tonight, the kids, Dan and Dan's Mom Came by. She brought me some homemade stew and a nice salad. (Yum). The kids had fun playing the Manny's toys! And at the end, I sent Kaley home with them. She was TORN, oh so torn about staying or going. So I ended up pushing her to go. (Even still she was still torn.) But I know how much good it will do her, even though MY life gets harder. She needs to get out of these 4 walls. She needs to run and play and have some fun. She needs to get frush air and sunshine. She needs to hug on her cats, feed her lizard, sleep without a baby crying and machines beeping and noisy nurses. She deserves a life outside of the hospital. I HAVE to be here, she doesn't. But even still, she cried on the way down the hallway. She'll be fine. And she made Daddy promise he'd bring her back on Friday.
I miss her already.
I have wondered why we have been granted all this "special" time together. We've certainly bonded in a special and unique way. I often wonder what will come of these past 4 months where we have spent more time IN the hospital than OUT of the hospital. I did the math ... 68 days IN the hospital and 53 days OUT of the hospital since September ... and for November, we were only in the hospital for 4 days so that tells you how long our stretches are. And she has been with me for MOST of those days.
I'm thankful for the amazing, beautiful, funny, caring, loving, gifted daughter that God has granted to me. She is certainly a special gift, a real blessing.
So here's hoping that tonight is uneventful. That we're able to get a decent night sleep. Afterall, I'm tired, feverish, still have that very sore throat and am feeling every bone in my body. Both my mother and mother in law have offered to come stay with him... and even though it's tempting, THIS is where I need to be. I've just caught too many things that put his life in jeopardy to feel safe leaving. Maybe I just have a "savior" complex or an over inflated view of what I am doing ... maybe I need to let go of some of the control. But the truth is ... I also don't feel a "release" to be able to leave him.
And besides, if I went home, I'd just find children who need parenting, clothes that need washing, dishes that need to be done, work, work, work. It would be VERY hard not to jump right in to housework and trying to catch up on what I've missed for the past almost month we've been here. Soo ... might as well stay put.
Dec 20, 2011
No PICC, need a plan
Monday was the official day that said he's "clear" of the yeast and bacteria in his blood. They've had only hand IVs during the past week or so. This is because if we introduced another central line, the remaining yeasts would have found it and set up house again on it. So they went with peripheral lines instead. Problem is ... those only last so long, especially if PPN (Similar to TPN) is going through the veins.
On the 13th, we got two GREAT IVs started and by miracle, they lasted. Well, the right one started showing troubles late on Friday so we stopped using it. Which puts extra pressure on the left hand.
By Monday, he was in severe pain from the IV on the right and they pulled it. His hand was swollen, had a cut on it from the catheter, etc. It was time for that sucker to come out.
So now that only left us with one IV ... one that is over a week old and has had PPN constantly. So it's just a matter of time until it blows. They called the infectious diseases doc to see if we could get a PICC (that's the one in the upper arm that can last about a month or so). And she said yes.
About 4pm, the IV team has us go down for the PICC placement.
Long story short, by about 7pm, we were headed back to the room with no PICC.
What happened? His veins are "sick". Apparently, there is literature that shows antimicrobials and antifungals can cause veins to go hypotonic and not hold. Sepsis also does a number on your veins as well. Throw in that he's already a VERY difficult stick and that he's been in the hospital for almost a month (needing frequent blood draws), there were very few viable veins.
But the team tried. They gave versed and let me stay in the room to keep him calm. For each attempt at a PICC line (starts with a large needle), they gave a shot of lidocane. By the end, he'd had 5 shots of lidocane, 5 attempts at a PICC (3 on one arm and 2 on the other) and they decided he'd had enough. Within seconds of getting into the vein, it would clot off. One trouble after the other. The IV ladies were just sickened that they couldn't get it ... but I know they did their darndest! If I'd not been in the room, I might have wondered ... but I SAW it with my own eyes.
So what's the plan from here? Wednesday they will probably try again for a PICC. If they can get it, we might even be able to go home on Friday or Saturday with IV antibiotics. If not, then we'll have to wait until the end of his treatment and then get his broviac placed on Monday and go home Tuesday.
And truthfully, I'm torn about the whole thing. With the PICC, we go home sooner but have to come back in about a month for a broviac then. But with the Broviac, we only have to be here a few extra days and don't have to come back in a month. Praying for wisdom on that whole thing since there's no way I could possibly know which is the "better" option. Either way, they say we will have a couple hour "Day Pass" on Sunday to leave the hospital and spend time with family.
Today (Tuesday), he's been very scared any time the door opens to our room. He cries until he sees who it is. There are people he knows never hurt him (like Doc and Carmen, the cleaning lady). But everyone else sets him off. He cries until they prove themselves not scary or they leave. (Sooo not like him.) The ones that try to win him over by trying to talk to him actually succeed. Those who patronize him (Like "You're fine." or "I'm not hurting you.") just continue to get the screams. I'm sorry for all the trauma he's been through.
And me? People wonder how I'm holding up? Truthfully ... I'm hanging in there but by the skin of my teeth. Like I am sleeping but wake up sore. I got my heating pad from home but it's not helping. I woke up this morning with my knee so "twisted" feeling that I couldn't put pressure on it for most of the day. Tonight it's just a bit sore. (I've never injured this knee so who knows where this came from.) I'm eating decently but feel like I've gained tons of weight. (I've never been a "scale" person ... but go by how my clothes feel and they're getting tight.) Just makes me feel uncomfortable. My tooth is still not fixed ... I have an offer of a dentist to help me but just haven't been able to leave here long enough to do it. Seems that every day he has a procedure where I have to be there.
Then this afternoon, I noticed I felt a bit hot and sure enough, a low grade fever. Sore throat. Headache. Drinking tons of water, eating fresh oranges, taking my vitamins but still ... we're in a hospital surrounded by very sick kids. I talked to the doc about it and he felt like there was nothing that could be done about it since anything I have Manny has already been exposed to anyway. So no need for me to leave.
Tonight, the fever is already gone and the rest I think will be better with a good night sleep. (Hoping that happens.) Amazing all the way stress manifests itself in a body, even when you THINK you're doing a decent job of controlling it.
Another concern for the night is ... his one IV he has left is on it's last leg. It's on day 8 and it's starting to show signs of phlebitis. It hurts when it's moved or flushed. Hopefully it can last the night. Because if not, they have to try an IV stick in the middle of the night without the aid of the IV team. (shiver). Even the night nurse is sending up prayers for this IV tonight I think.
One way or the other, we have to have another line tomorrow. New IV, maybe a PICC. Still rethinking what will be the best idea.
On the 13th, we got two GREAT IVs started and by miracle, they lasted. Well, the right one started showing troubles late on Friday so we stopped using it. Which puts extra pressure on the left hand.
By Monday, he was in severe pain from the IV on the right and they pulled it. His hand was swollen, had a cut on it from the catheter, etc. It was time for that sucker to come out.
So now that only left us with one IV ... one that is over a week old and has had PPN constantly. So it's just a matter of time until it blows. They called the infectious diseases doc to see if we could get a PICC (that's the one in the upper arm that can last about a month or so). And she said yes.
About 4pm, the IV team has us go down for the PICC placement.
Long story short, by about 7pm, we were headed back to the room with no PICC.
What happened? His veins are "sick". Apparently, there is literature that shows antimicrobials and antifungals can cause veins to go hypotonic and not hold. Sepsis also does a number on your veins as well. Throw in that he's already a VERY difficult stick and that he's been in the hospital for almost a month (needing frequent blood draws), there were very few viable veins.
But the team tried. They gave versed and let me stay in the room to keep him calm. For each attempt at a PICC line (starts with a large needle), they gave a shot of lidocane. By the end, he'd had 5 shots of lidocane, 5 attempts at a PICC (3 on one arm and 2 on the other) and they decided he'd had enough. Within seconds of getting into the vein, it would clot off. One trouble after the other. The IV ladies were just sickened that they couldn't get it ... but I know they did their darndest! If I'd not been in the room, I might have wondered ... but I SAW it with my own eyes.
 |
| Kids visiting Manny's Ipad, er .. I mean visiting Manny! |
So what's the plan from here? Wednesday they will probably try again for a PICC. If they can get it, we might even be able to go home on Friday or Saturday with IV antibiotics. If not, then we'll have to wait until the end of his treatment and then get his broviac placed on Monday and go home Tuesday.
And truthfully, I'm torn about the whole thing. With the PICC, we go home sooner but have to come back in about a month for a broviac then. But with the Broviac, we only have to be here a few extra days and don't have to come back in a month. Praying for wisdom on that whole thing since there's no way I could possibly know which is the "better" option. Either way, they say we will have a couple hour "Day Pass" on Sunday to leave the hospital and spend time with family.
Today (Tuesday), he's been very scared any time the door opens to our room. He cries until he sees who it is. There are people he knows never hurt him (like Doc and Carmen, the cleaning lady). But everyone else sets him off. He cries until they prove themselves not scary or they leave. (Sooo not like him.) The ones that try to win him over by trying to talk to him actually succeed. Those who patronize him (Like "You're fine." or "I'm not hurting you.") just continue to get the screams. I'm sorry for all the trauma he's been through.
And me? People wonder how I'm holding up? Truthfully ... I'm hanging in there but by the skin of my teeth. Like I am sleeping but wake up sore. I got my heating pad from home but it's not helping. I woke up this morning with my knee so "twisted" feeling that I couldn't put pressure on it for most of the day. Tonight it's just a bit sore. (I've never injured this knee so who knows where this came from.) I'm eating decently but feel like I've gained tons of weight. (I've never been a "scale" person ... but go by how my clothes feel and they're getting tight.) Just makes me feel uncomfortable. My tooth is still not fixed ... I have an offer of a dentist to help me but just haven't been able to leave here long enough to do it. Seems that every day he has a procedure where I have to be there.
Then this afternoon, I noticed I felt a bit hot and sure enough, a low grade fever. Sore throat. Headache. Drinking tons of water, eating fresh oranges, taking my vitamins but still ... we're in a hospital surrounded by very sick kids. I talked to the doc about it and he felt like there was nothing that could be done about it since anything I have Manny has already been exposed to anyway. So no need for me to leave.
Tonight, the fever is already gone and the rest I think will be better with a good night sleep. (Hoping that happens.) Amazing all the way stress manifests itself in a body, even when you THINK you're doing a decent job of controlling it.
Another concern for the night is ... his one IV he has left is on it's last leg. It's on day 8 and it's starting to show signs of phlebitis. It hurts when it's moved or flushed. Hopefully it can last the night. Because if not, they have to try an IV stick in the middle of the night without the aid of the IV team. (shiver). Even the night nurse is sending up prayers for this IV tonight I think.
One way or the other, we have to have another line tomorrow. New IV, maybe a PICC. Still rethinking what will be the best idea.
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