His temp is normal. He still has a rash. He still works really hard at time to breathe. He stopped vomiting up his feeds this afternoon. It still hurts to watch him like this. When I was there for a while this morning and he wasn't a wild man, this is what I caught a glimpse of. Enjoy.
Family is coming in to town tomorrow for Grandma's funeral. May not hear much from me for the next few days. Hopefully, Malachi will either stay as is but comfortable, or continue to improve so that he can be well enough for surgery next week. G-tube and trach--I'm terrified and completely grossed out by the whole idea the more I think about it. Therefore, no thinking and I will just learn what I need to do in order to take care of my baby the best that I can. (Please pray for many hours of home nursing care and that all is set up by the time of discharge!)
Saturday, January 30, 2010
words cannot express
THANK YOU … THANK YOU… THANK YOU God certainly has a way of making a hurting soul feel His love and provision in times of weakness. The following has happened in just the last week:
Tuesdays are always a treat for me because I can spend guilt-free time at the hospital while a couple of our youth group girls come supervise naptime and keep Emerson occupied while I'm at the hospital until John gets home. Not only do they watch Emma, BUT they also catch me up on some housework (dishes, sweeping, etc.). Thanks, girls!
A check in the mail arrived for $500 the day we got a flat tire requiring it to be replaced as well as a few other things that were "off"... gotta love car repairs.
So because of the flat and all that ensued, we are down to one vehicle. I didn't have a phone or a car and Malachi was not doing well at the hospital. Within ten minutes of getting word out that Malachi needed extra prayer, I had offers for rides to the hospital, babysitting for Emma, and a car to borrow for a couple days. Sadly enough, the car that is in working condition is NOT our good one. Quick tangent -- Pray that Bonnie ('92 bonneville) hangs in there for us. between our current expenses, trying to finish off school loans, and wanting to keep $ in the bank for a house down payment leaves no room for a car if something bad happens to Bonnie, and with all of Malachi's upcoming followup visits, we need a second vehicle..
A friend from church offered to come over and watch emma during/after naptime and to clean for me... AMAZING! A clean house is a much more relaxing house, especially with the stress of everything else going on.
And that’s not even including the countless prayers, financial support, care packages, and words of encouragement we have received thus far on our Malachi journey… THANK YOU!!
Labels:
malachi
Friday, January 29, 2010
sad pics and video clips
A quick comparison between a taped ET tube and a NeoBar (we prefer the latter--you can't really see his face with all the tape)...
(looks at those chunky arms!!!)
some sad videos from today... sorry, there weren't really moments of contentedness on my baby's face today. he's not the same Malachi I had all last week... he's definitely feeling bad. This is a shot of his breathing before his ET tube was repositioned. somehow it had wiggled a full cm too low, and was not working as it should... (this is also what his breathing sort of looked like immediately after his delivery before his was intubated.
This is him right around shift change. He was given more sedation and then finally fell asleep. It hurts to see my son like this...
yay, caffeine!
And this is why I am able to stay up and watch Star Wars (a Christmas gift to John was to watch all six... thankfully, we have netflix, so at least they are spread out with days inbetween) with my husband and try to form my thoughts into some sort of coherent manner while catching up with family and friends through internet chatting.Thank you, John, for my Christmas gift card that is still giving ;) although, I may need more starbucks as incentive to stay awake!
What's your favorite coffee drink? I stick to the grande caramel latte. I'm too chicken to try anything else!
Labels:
malachi
finally resting
last night Malachi had to be reintubated.
Before I left the hospital last night, I was told that there was some fluid around his lungs, but nothing worrisome. I am hoping they will do another x-ray today to compare and verify that it has not gotten any worse. When they switched him to CPAP, they also stopped his feeds to make sure he would tolerate all that extra air being in his belly. i can only imagine that he's starving... it's been a good 12 hours. Restarting feeds is definitely something that I want my nurse to bring up at rounds this morning.
Also, before I left, I was told that cardiology would be on the unit doing an echo on another baby, so the fellow was going to have them stop by and evaluate Malachi. When they finally got bedside, Malachi decided to once again retract and stop breathing and his oxygen sats dropped immediately to the 40s. He brought himself out of it, but it is not a pretty sight. They decided at that time to intubate.
He was given more sedation to handle the actual intubation process, but I guess as soon as he was intubated, his body finally relaxed having an open airway and he could breath a little easier. They pulled out tons of secretions from his ET tube. They were cloudy white/yellow secretions tinged with a bit of blood from the tube going down his throat. With the combination of the sedation, the removal of all those deep secretions, and an open airway, he was able to fall asleep. poor guy.
This morning, he still has a rash and now he has a really low temp of 35.4 (95.7 F).
definitely a few steps in the wrong direction, that's for sure.
Before I left the hospital last night, I was told that there was some fluid around his lungs, but nothing worrisome. I am hoping they will do another x-ray today to compare and verify that it has not gotten any worse. When they switched him to CPAP, they also stopped his feeds to make sure he would tolerate all that extra air being in his belly. i can only imagine that he's starving... it's been a good 12 hours. Restarting feeds is definitely something that I want my nurse to bring up at rounds this morning.
Also, before I left, I was told that cardiology would be on the unit doing an echo on another baby, so the fellow was going to have them stop by and evaluate Malachi. When they finally got bedside, Malachi decided to once again retract and stop breathing and his oxygen sats dropped immediately to the 40s. He brought himself out of it, but it is not a pretty sight. They decided at that time to intubate.
He was given more sedation to handle the actual intubation process, but I guess as soon as he was intubated, his body finally relaxed having an open airway and he could breath a little easier. They pulled out tons of secretions from his ET tube. They were cloudy white/yellow secretions tinged with a bit of blood from the tube going down his throat. With the combination of the sedation, the removal of all those deep secretions, and an open airway, he was able to fall asleep. poor guy.
This morning, he still has a rash and now he has a really low temp of 35.4 (95.7 F).
definitely a few steps in the wrong direction, that's for sure.
Thursday, January 28, 2010
long day
And I thought this was going to be the most of my worries for the day...
we need to remember that Emma is tall enough to reach the countertops. not super thrilled at the time to clean that one up. then i find out something is wrong at the hospital. of course, i was stuck at home with no phone and no vehicle (flat tire the night before requiring a new tire, so it was in the shop today). i get the word out (at the mercy of people online and checking their e-mail) and amazingly, i have offers for people to pick me up and take me to the hospital and for people willing to let me use their car. the pic below is a quick example of the hot spots i get when i'm stressed thinking about chi that show up on my cheeks. this one is pretty tame... at times they can get very purple.
anywho, i eventually made it to the hospital and found a sad agitated baby. here they attempted placing him on his belly to help loosen up any secretions and see if that would help his sats. he was NOT a fan.
this picture makes him seem like there is a bit more color to him than there actually was at the time.
taken not too long before i left the hospital for the night. top right corner says "tachy 235"... his HR had gotten higher than that before i left. Before that, I also got to see him retract when they took off the leads for the 12-lead EKG and stop breathing. he went BRIGHT purple and his sats immediately dropped into the 30s.
to try to relieve him of some work, they are attempting CPAP tonight instead of vapotherm. this will provide more flow. i was not a big fan of hearing this. as you can see, neither was he... he was really red while fighting this.
in motion...
we need to remember that Emma is tall enough to reach the countertops. not super thrilled at the time to clean that one up. then i find out something is wrong at the hospital. of course, i was stuck at home with no phone and no vehicle (flat tire the night before requiring a new tire, so it was in the shop today). i get the word out (at the mercy of people online and checking their e-mail) and amazingly, i have offers for people to pick me up and take me to the hospital and for people willing to let me use their car. the pic below is a quick example of the hot spots i get when i'm stressed thinking about chi that show up on my cheeks. this one is pretty tame... at times they can get very purple.
anywho, i eventually made it to the hospital and found a sad agitated baby. here they attempted placing him on his belly to help loosen up any secretions and see if that would help his sats. he was NOT a fan.
this picture makes him seem like there is a bit more color to him than there actually was at the time.
taken not too long before i left the hospital for the night. top right corner says "tachy 235"... his HR had gotten higher than that before i left. Before that, I also got to see him retract when they took off the leads for the 12-lead EKG and stop breathing. he went BRIGHT purple and his sats immediately dropped into the 30s.
to try to relieve him of some work, they are attempting CPAP tonight instead of vapotherm. this will provide more flow. i was not a big fan of hearing this. as you can see, neither was he... he was really red while fighting this.
in motion...
6:30 update
Still not progressing. He is now requiring 100% oxygen support on 5 liters vapotherm. He's very labile. He's been sleeping for the last few hours. This is good considering he's been up all night and his body needs all the rest it can get right now. Watching his monitor is draining, but I can't seem to turn away. The irregularity of this little guy's heart beat just astounds me. It hurts my heart that things aren't right in his teeny, tiny frame. It hurts more that I can't do anything about it. I feel defeated for him, which is wrong. He is fighting and I know with my head I serve a good God. A God with purpose for those who trust in Him. A God who will give Malachi and myself the strength to endure. Unfortunately, I also have this weak, fragile, human heart who's inclination is to turn away and withdraw from God and try to blame Him and question His purposes. God is good. God is in control. God loves me and He loves my son more than I will ever comprehend. In that, I find rest. I find peace. I find comfort.
430 update
So CBC was mostly fine with a slightly elevated white blood cell
count. Spinal fluid exam was fine and completely without white cells.
From what I gather this rules out meningitis. Good. Best case, he may
have a minor ear infection. We now wait for culture growth. Currently
his heart rate is elevated. It gas been ranging from 160-180 with
occasional jumps to 190s as high as 204. It's definitely creeping up
though. His respiratory rate is also high ranging from 70-90. Lastly,
his sats. They are the worst they've been since he recovered from his
last heart surgery. They are mostly low 70s, but they can only be
maintained on now 5liters vapotherm and 80% oxygen. Looks like it
will be a long night for mama. Cardiology should be notified if they
haven't been already and hopefully we can figure out what's wrong with
our baby.
count. Spinal fluid exam was fine and completely without white cells.
From what I gather this rules out meningitis. Good. Best case, he may
have a minor ear infection. We now wait for culture growth. Currently
his heart rate is elevated. It gas been ranging from 160-180 with
occasional jumps to 190s as high as 204. It's definitely creeping up
though. His respiratory rate is also high ranging from 70-90. Lastly,
his sats. They are the worst they've been since he recovered from his
last heart surgery. They are mostly low 70s, but they can only be
maintained on now 5liters vapotherm and 80% oxygen. Looks like it
will be a long night for mama. Cardiology should be notified if they
haven't been already and hopefully we can figure out what's wrong with
our baby.
Labels:
malachi
please pray
ok so hospital just called...
Malachi's temp spiked to like 38.4C (101.2 F).
He is super irritable.
His sats havent been all that great... not like 50s or 60s but low 70s.
They want to check for infection.
Full workup: blood and urine cultures
spinal tap thing to check for infection in the spinal fluid
one car got a flat yesterday so it's in the shop getting a new tire... john has the other car... i have no car and no phone... i'm praying for comfort and grace to not go crazy stuck here at home... away from my baby.
Malachi's temp spiked to like 38.4C (101.2 F).
He is super irritable.
His sats havent been all that great... not like 50s or 60s but low 70s.
They want to check for infection.
Full workup: blood and urine cultures
spinal tap thing to check for infection in the spinal fluid
one car got a flat yesterday so it's in the shop getting a new tire... john has the other car... i have no car and no phone... i'm praying for comfort and grace to not go crazy stuck here at home... away from my baby.
a look into our future...
Posted by a new friend Amber. Thank you for all your encouragement thus far as we've begun this crazy road we now know as Malachi.
If you only knew...
Lady in the waiting room,
If only you knew, what a miracle she is.
You would not be asking me why she can't tell you how old she is.
If only you knew, I have 5 children.
You would not be sharing with me...how easily you potty trained your two year old, giving me advice.
If only you knew, she is defying the odds.
You would not be wondering why you can't understand what she is saying.
If only you knew, how many times she has been poked and cut on.
You would not be explaining to me how to wean her from her paci, she's way too old to have one.
Most days...I would explain it all to you.
I would say, she is missing an important part of a chromosome. I would share that she has heart disease and has endured more pain and fear in her short three and a half years...than we will probably ever experience. I would defend her speech, the paci, and her awkward gait.
Today is not most days.
I just don't feel like sharing that much of her with you today.
Sorry.
So instead...you can walk away...thinking that I am a mom with few tools.
It's ok...today.
What's sad is...I was once you. I sat with my healthy, age appropriate child and gasped at the child who was way too big to have a pacifier and still wearing a diaper. I too would have thought..."well of course I can't understand her, take the paci!" I was oblivious to processing disorders. I had no knowledge of heart disease in children, congenital anomalies, diaphragmatic hernias, the importance of perfectly formed chromosomes and I thought all developmental delays were environmental.
Ignorance is NOT bliss. We could have educated you. I'm sorry...
If you only knew...
Lady in the waiting room,
If only you knew, what a miracle she is.
You would not be asking me why she can't tell you how old she is.
If only you knew, I have 5 children.
You would not be sharing with me...how easily you potty trained your two year old, giving me advice.
If only you knew, she is defying the odds.
You would not be wondering why you can't understand what she is saying.
If only you knew, how many times she has been poked and cut on.
You would not be explaining to me how to wean her from her paci, she's way too old to have one.
Most days...I would explain it all to you.
I would say, she is missing an important part of a chromosome. I would share that she has heart disease and has endured more pain and fear in her short three and a half years...than we will probably ever experience. I would defend her speech, the paci, and her awkward gait.
Today is not most days.
I just don't feel like sharing that much of her with you today.
Sorry.
So instead...you can walk away...thinking that I am a mom with few tools.
It's ok...today.
What's sad is...I was once you. I sat with my healthy, age appropriate child and gasped at the child who was way too big to have a pacifier and still wearing a diaper. I too would have thought..."well of course I can't understand her, take the paci!" I was oblivious to processing disorders. I had no knowledge of heart disease in children, congenital anomalies, diaphragmatic hernias, the importance of perfectly formed chromosomes and I thought all developmental delays were environmental.
Ignorance is NOT bliss. We could have educated you. I'm sorry...
Labels:
malachi
Wednesday, January 27, 2010
untitled
Grandma Hubble: dazed. numb. desensitized to death. comforted by her salvation through our Savior. hurting for family who knew her better than i did. funeral monday. speechless.
Malachi: thankful for stability. preparing for surgery. excited for family to meet him. ready to bring him home and officially feel like a family of four.
Grandma's passing must be affecting me more than I had originally thought. Multiple people in the NICU who have seen me day in and day out have asked (not knowing what was going on at home) if I was doing okay. They could tell something is off. I know Grandma is now pain free and rejoicing in our Savior with her husband. I am thankful for a God who loves us enough to provide a way for our sins to be forgiven and the ability to spend eternity with Him. Not only that, but for those who trust in Him with their lives, He gives the grace for today. Thank You, Lord, for Your grace--without which I would be a miserable soul, unwilling to get up each morning and face the day.
Malachi: thankful for stability. preparing for surgery. excited for family to meet him. ready to bring him home and officially feel like a family of four.
Grandma's passing must be affecting me more than I had originally thought. Multiple people in the NICU who have seen me day in and day out have asked (not knowing what was going on at home) if I was doing okay. They could tell something is off. I know Grandma is now pain free and rejoicing in our Savior with her husband. I am thankful for a God who loves us enough to provide a way for our sins to be forgiven and the ability to spend eternity with Him. Not only that, but for those who trust in Him with their lives, He gives the grace for today. Thank You, Lord, for Your grace--without which I would be a miserable soul, unwilling to get up each morning and face the day.
Labels:
malachi
Tuesday, January 26, 2010
actually...
Me: Emma, who goes with Aunt Bri.
Emma: Uncle Evan.
(pause)
Emma: Acutally.... Uncle Evy!
Emma: Uncle Evan.
(pause)
Emma: Acutally.... Uncle Evy!
Labels:
mouths of babes
funnies daddy has remembered
I know lately I have loved when coming home and she will run to meet me and give a big hug and I will say I love you punkin and she will say… you missed me! As if like of course you missed me daddy. And I will of course have to agree and she will say I miss you too. Its just super cute.
Normally when I get up I get her cereal and milk on saturdays. Well emma was especially impatient this past Saturday. So either I typically get her her cereal first or maybe she just really wanted her cereal but I went to the cupboard to get a cup and said… daddy no cereal in there and openned the pantry door for me.
There was the time when we asked her about who she loves. We tend to ask her who loves her and she would say mommy daddy and Jesus. Then that one time I asked her who she loved and she said after a short pause… emma! And I said well yeah but who else? And she said… boys!
You could tell the story about when I was takin a shower after you left with papa russ to go to the hospital to see chi. I thought I heard a door open so I peak through the door and emma had gotten out of room. And snuck into our bed… pulled back the covers and snuggled on in. I don’t know if she new I was in the bathroom and was just sneaky or if she didn’t see anyone around and thought well I might as well sleep in the big bed…
Labels:
mouths of babes
patience
In the car while I was on the phone with John...
Emma: Mommy, I want my glasses.
(I ignore and continue chatting)
Emma: Mommy, I want my glasses.
(still ignoring)
Emma: Mommy, I want my glasses.
Me: Emma, you need to be patient, okay?
Emma: Okay. (pause) but I want my glasses.
Emma: Mommy, I want my glasses.
(I ignore and continue chatting)
Emma: Mommy, I want my glasses.
(still ignoring)
Emma: Mommy, I want my glasses.
Me: Emma, you need to be patient, okay?
Emma: Okay. (pause) but I want my glasses.
Labels:
mouths of babes
sorry, Dora
John and Emma were watching Dora.
Dora: Let's sing a silly song!
Emma: NO!
(John didn't hear what was said on the show)
John: Emma, what did you say?
Emma: No, I don't want to do a silly dance!
Dora: Let's sing a silly song!
Emma: NO!
(John didn't hear what was said on the show)
John: Emma, what did you say?
Emma: No, I don't want to do a silly dance!
Labels:
mouths of babes
Home is on the Horizon
okay, so it's TECHNICALLY on the horizon... even if it's way off in the distance. Malachi has made great strides, but he still has a long way to go; however, the agenda for this hospitalization is getting MUCH shorter. we are having another care conference on Thursday (a much more optimistic conference than the one a couple weeks ago pre-heart surgery) and hopefully we can kind of get a road map of where we are and where we need to go before HOME!!!
we took a step back last night from a respiratory standpoint. moving him from three liters of vapotherm back up to four took care of his desat issues through the night. i'm thankful that we are still on vapotherm!
moving forward, though, someone got a big boy bath today!!
we took a step back last night from a respiratory standpoint. moving him from three liters of vapotherm back up to four took care of his desat issues through the night. i'm thankful that we are still on vapotherm!
moving forward, though, someone got a big boy bath today!!
Home is on the Horizon
okay, so it's TECHNICALLY on the horizon... even if it's way off in the distance. Malachi has made great strides, but he still has a long way to go; however, the agenda for this hospitalization is getting MUCH shorter. we are having another care conference on Thursday (a much more optimistic conference than the one a couple weeks ago pre-heart surgery) and hopefully we can kind of get a road map of where we are and where we need to go before HOME!!!
we took a step back last night from a respiratory standpoint. moving him from three liters of vapotherm back up to four took care of his desat issues through the night. i'm thankful that we are still on vapotherm!
moving forward, though, someone got a big boy bath today!!
we took a step back last night from a respiratory standpoint. moving him from three liters of vapotherm back up to four took care of his desat issues through the night. i'm thankful that we are still on vapotherm!
moving forward, though, someone got a big boy bath today!!
Monday, January 25, 2010
quick pics
Definitely not how we envisioned today going. Most of my day was spent out of the house, meaning no time for blogging. Here are some pics until I get around to updating the blog.
We got to try Chi in a few other hold positions :) he tolerated it pretty well. He even let me do some exercises while he was facing me and sitting in his boppy.
We got to try Chi in a few other hold positions :) he tolerated it pretty well. He even let me do some exercises while he was facing me and sitting in his boppy.
quick pics
Definitely not how we envisioned today going. Most of my day was spent out of the house, meaning no time for blogging. Here are some pics until I get around to updating the blog.
We got to try Chi in a few other hold positions :) he tolerated it pretty well. He even let me do some exercises while he was facing me and sitting in his boppy.
We got to try Chi in a few other hold positions :) he tolerated it pretty well. He even let me do some exercises while he was facing me and sitting in his boppy.
Grandma Hubble
Please pray for John's Grandma Hubble. She is very ill in the hospital. We find comfort in the fact that she is a believer and follower of Christ. This is a picture of her watching two of her 20+ great-grandkids this past summer. We love you, GG! (Great Grandma)
Labels:
malachi
Grandma Hubble
Please pray for John's Grandma Hubble. She is very ill in the hospital. We find comfort in the fact that she is a believer and follower of Christ. This is a picture of her watching two of her 20+ great-grandkids this past summer. We love you, GG! (Great Grandma)
Sunday, January 24, 2010
stability
Another stable day! I love saying that... he's definitely not perfect, or ready to come home, BUT he's leaps and bounds better than he was even two weeks ago. he still tends to have one legitimate desat per shift. Today, he dropped to the 50s while I was there. Usually, it's caused because he gets thick secretions stuck in the back of his throat that he can't swallow or cough up. Myself or a nurse then has to put a suction catheter in his mouth and down his throat to see if we can get it out for him. Unfortunately, I can only imagine that his throat is super sore and agitated from being intubated for so long, so a hard-tipped catheter can NOT feel good back there. If we are able to get the secretion out, his sats usually creep back up. If we are unable to suction anything, then we try to comfort him some other way. Lately, a pacifier seems to be doing the trick. It's so nice to see him doing and enjoying a "normal" baby thing. Some of his drops, though, have gotten down into the 30s. He is also having very low urine output and his digestive system may not be handling the 30 cal formula, things we're keeping an eye on.
I will be chatting more specifically with the doctors at the beginning of the week to kind of get an idea of what needs to take place before we can bring Baby Chi HOME!!! We still are looking at a month or so (and that's super optimistic), but realizing that there is a very good chance that we will get to bring baby home is AMAZING!
On an unrelated note, Emerson is a SPONGE. It's amazing. A clip of her and the two memory verses we've been working on will be up on punkin' ponderings tomorrow sometime.
I will be chatting more specifically with the doctors at the beginning of the week to kind of get an idea of what needs to take place before we can bring Baby Chi HOME!!! We still are looking at a month or so (and that's super optimistic), but realizing that there is a very good chance that we will get to bring baby home is AMAZING!
On an unrelated note, Emerson is a SPONGE. It's amazing. A clip of her and the two memory verses we've been working on will be up on punkin' ponderings tomorrow sometime.
stability
Another stable day! I love saying that... he's definitely not perfect, or ready to come home, BUT he's leaps and bounds better than he was even two weeks ago. he still tends to have one legitimate desat per shift. Today, he dropped to the 50s while I was there. Usually, it's caused because he gets thick secretions stuck in the back of his throat that he can't swallow or cough up. Myself or a nurse then has to put a suction catheter in his mouth and down his throat to see if we can get it out for him. Unfortunately, I can only imagine that his throat is super sore and agitated from being intubated for so long, so a hard-tipped catheter can NOT feel good back there. If we are able to get the secretion out, his sats usually creep back up. If we are unable to suction anything, then we try to comfort him some other way. Lately, a pacifier seems to be doing the trick. It's so nice to see him doing and enjoying a "normal" baby thing. Some of his drops, though, have gotten down into the 30s. He is also having very low urine output and his digestive system may not be handling the 30 cal formula, things we're keeping an eye on.
I will be chatting more specifically with the doctors at the beginning of the week to kind of get an idea of what needs to take place before we can bring Baby Chi HOME!!! We still are looking at a month or so (and that's super optimistic), but realizing that there is a very good chance that we will get to bring baby home is AMAZING!
On an unrelated note, Emerson is a SPONGE. It's amazing. A clip of her and the two memory verses we've been working on will be up on punkin' ponderings tomorrow sometime.
I will be chatting more specifically with the doctors at the beginning of the week to kind of get an idea of what needs to take place before we can bring Baby Chi HOME!!! We still are looking at a month or so (and that's super optimistic), but realizing that there is a very good chance that we will get to bring baby home is AMAZING!
On an unrelated note, Emerson is a SPONGE. It's amazing. A clip of her and the two memory verses we've been working on will be up on punkin' ponderings tomorrow sometime.
Friday, January 22, 2010
3 good days!
Another good day--three in a row!! it's the little battles. Chi's life will be made up of MANY, MANY, MANY small victories that most simply take for granted. Talk about a change in perspective.
Started breaking up his feeds again. 30 calorie formula (breast milk is 21 cal) 80+ ml spread out over 2 1/2 hours. Feeds are started every three hours. If he tolerates this fine, they will condense to having the feeds spread to just 2 hours. Central line was pulled. All his meds are oral right now (except his Lovenox shot. his poor little thighs are BRUISED! it's awful). He got his first round of immunizations today.
Started breaking up his feeds again. 30 calorie formula (breast milk is 21 cal) 80+ ml spread out over 2 1/2 hours. Feeds are started every three hours. If he tolerates this fine, they will condense to having the feeds spread to just 2 hours. Central line was pulled. All his meds are oral right now (except his Lovenox shot. his poor little thighs are BRUISED! it's awful). He got his first round of immunizations today.
Malachi's fort. He sleeps much better this way:
Go Colts!
Notice what's missing? The ventilator! They tend to keep it bedside for a couple days "just in case" something happens and he needs to be intubated quickly. It's gone! And he is down to 4 liters of vapotherm. Sounds like he will be weaned to 3 liters tomorrow if he has a stable night!
He was dreaming about something nice! It's good to know he's not ALWAYS in pain.
In motion. Sweet dreams:
Go Colts!
Notice what's missing? The ventilator! They tend to keep it bedside for a couple days "just in case" something happens and he needs to be intubated quickly. It's gone! And he is down to 4 liters of vapotherm. Sounds like he will be weaned to 3 liters tomorrow if he has a stable night!
He was dreaming about something nice! It's good to know he's not ALWAYS in pain.
In motion. Sweet dreams:
3 good days!
Another good day--three in a row!! it's the little battles. Chi's life will be made up of MANY, MANY, MANY small victories that most simply take for granted. Talk about a change in perspective.
Started breaking up his feeds again. 30 calorie formula (breast milk is 21 cal) 80+ ml spread out over 2 1/2 hours. Feeds are started every three hours. If he tolerates this fine, they will condense to having the feeds spread to just 2 hours. Central line was pulled. All his meds are oral right now (except his Lovenox shot. his poor little thighs are BRUISED! it's awful). He got his first round of immunizations today.
Started breaking up his feeds again. 30 calorie formula (breast milk is 21 cal) 80+ ml spread out over 2 1/2 hours. Feeds are started every three hours. If he tolerates this fine, they will condense to having the feeds spread to just 2 hours. Central line was pulled. All his meds are oral right now (except his Lovenox shot. his poor little thighs are BRUISED! it's awful). He got his first round of immunizations today.
Malachi's fort. He sleeps much better this way:
Go Colts!
Notice what's missing? The ventilator! They tend to keep it bedside for a couple days "just in case" something happens and he needs to be intubated quickly. It's gone! And he is down to 4 liters of vapotherm. Sounds like he will be weaned to 3 liters tomorrow if he has a stable night!
He was dreaming about something nice! It's good to know he's not ALWAYS in pain.
In motion. Sweet dreams:
Go Colts!
Notice what's missing? The ventilator! They tend to keep it bedside for a couple days "just in case" something happens and he needs to be intubated quickly. It's gone! And he is down to 4 liters of vapotherm. Sounds like he will be weaned to 3 liters tomorrow if he has a stable night!
He was dreaming about something nice! It's good to know he's not ALWAYS in pain.
In motion. Sweet dreams:
Thursday, January 21, 2010
stable
it's crazy to say that Malachi has had two consecutive "stable" days. i'm not sure that i've ever been able to say that before. honestly, i didn't think that i'd ever be able to say it either. crazy that TWO days of stability is progress.
seems to be that next week we will be talking more seriously about a g-tube and the possibility of a trach. ideally, we would like to stay away from a trach, but he has to be able to handle his secretions without desating. at this point, he seems to be unable to do it on his own. pray that it would be reasonable for him to NOT need a trach.
we're sleepy. it's bedtime. both of us have work in the morning. (i started MT work parttime again, at least until Chi comes home)
seems to be that next week we will be talking more seriously about a g-tube and the possibility of a trach. ideally, we would like to stay away from a trach, but he has to be able to handle his secretions without desating. at this point, he seems to be unable to do it on his own. pray that it would be reasonable for him to NOT need a trach.
we're sleepy. it's bedtime. both of us have work in the morning. (i started MT work parttime again, at least until Chi comes home)
stable
it's crazy to say that Malachi has had two consecutive "stable" days. i'm not sure that i've ever been able to say that before. honestly, i didn't think that i'd ever be able to say it either. crazy that TWO days of stability is progress.
seems to be that next week we will be talking more seriously about a g-tube and the possibility of a trach. ideally, we would like to stay away from a trach, but he has to be able to handle his secretions without desating. at this point, he seems to be unable to do it on his own. pray that it would be reasonable for him to NOT need a trach.
we're sleepy. it's bedtime. both of us have work in the morning. (i started MT work parttime again, at least until Chi comes home)
seems to be that next week we will be talking more seriously about a g-tube and the possibility of a trach. ideally, we would like to stay away from a trach, but he has to be able to handle his secretions without desating. at this point, he seems to be unable to do it on his own. pray that it would be reasonable for him to NOT need a trach.
we're sleepy. it's bedtime. both of us have work in the morning. (i started MT work parttime again, at least until Chi comes home)
Wednesday, January 20, 2010
12 weeks + 1 day
In all the excitement surrounding extubation, I forgot to mention that he is also now in a big boy bed. He no longer requires a bed with a warmer.
These are the lovely suctioning devices. On the far left there is the "onion" which is best for nostrils. However, his nasal secretions as far as what comes out his nostrils has greatly subsided. Unfortunately, they seem to just drift down the back of his throat and he physically can't swallow them. The second one on the left is a bebonker (or something) which is good for oral secretions. The long catheter is for when his secretions get stuck in the very back of his throat. If we were to leave him alone and not suction out those secretions, he wouldn't make it. Three times today he desated into the 30s when these secretions were blocking his airway. The syringe is just to administer his oral meds into his feeding tube.
A reminder to all nursing staff:
These are the lovely suctioning devices. On the far left there is the "onion" which is best for nostrils. However, his nasal secretions as far as what comes out his nostrils has greatly subsided. Unfortunately, they seem to just drift down the back of his throat and he physically can't swallow them. The second one on the left is a bebonker (or something) which is good for oral secretions. The long catheter is for when his secretions get stuck in the very back of his throat. If we were to leave him alone and not suction out those secretions, he wouldn't make it. Three times today he desated into the 30s when these secretions were blocking his airway. The syringe is just to administer his oral meds into his feeding tube.
A reminder to all nursing staff:
Labels:
malachi
12 weeks + 1 day
In all the excitement surrounding extubation, I forgot to mention that he is also now in a big boy bed. He no longer requires a bed with a warmer.
These are the lovely suctioning devices. On the far left there is the "onion" which is best for nostrils. However, his nasal secretions as far as what comes out his nostrils has greatly subsided. Unfortunately, they seem to just drift down the back of his throat and he physically can't swallow them. The second one on the left is a bebonker (or something) which is good for oral secretions. The long catheter is for when his secretions get stuck in the very back of his throat. If we were to leave him alone and not suction out those secretions, he wouldn't make it. Three times today he desated into the 30s when these secretions were blocking his airway. The syringe is just to administer his oral meds into his feeding tube.
A reminder to all nursing staff:
These are the lovely suctioning devices. On the far left there is the "onion" which is best for nostrils. However, his nasal secretions as far as what comes out his nostrils has greatly subsided. Unfortunately, they seem to just drift down the back of his throat and he physically can't swallow them. The second one on the left is a bebonker (or something) which is good for oral secretions. The long catheter is for when his secretions get stuck in the very back of his throat. If we were to leave him alone and not suction out those secretions, he wouldn't make it. Three times today he desated into the 30s when these secretions were blocking his airway. The syringe is just to administer his oral meds into his feeding tube.
A reminder to all nursing staff:
Tuesday, January 19, 2010
pics and video
Notice anything different? Extubation Day!!!
The Video doesn't seem to be working. I will try and re-upload it later.
The Video doesn't seem to be working. I will try and re-upload it later.
pics and video
Notice anything different? Extubation Day!!!
The Video doesn't seem to be working. I will try and re-upload it later.
The Video doesn't seem to be working. I will try and re-upload it later.
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