We bought one! A camper! We had all but given up on finding one that could fit all 5 of us but still be light enough for our van to pull. We went to 3 different RV places, looked online, and had almost decided we would have to spend more than we really wanted to and get a Class C motor home to fit our whole family when boom - today on a whim went to a new place and there she was. Perfect weight, perfect size, bunks for the girls, a dinette/fold out bed for little man to sleep in that is right beside our bed. Kitchen and bathroom. Awning. What more could we want. And all under 4000 lbs. Aaron and I sat on the bed and said this could work. It's the first one we've seen that I could picture us in if that makes sense. C was in love with this beautiful big motor home that had 2 slides so there was a lot of open floor she thought was a perfect dance floor- that 's why she wanted it... For the dance floor :) it felt huge to me and i just couldn't imagine us in it. I thought she would bring it up - compare the 2 - but she didn't. She loved this little one right away. A lot smaller and a lot less expensive but perfect. So we putz around - the girls used the restroom in the camper store about 10 times, they spent ages picking out what to spend their quarter on in the candy dispenser (Mike and Ike's for K - which she shared with her sister- and a giant gumball for C- which she did not share with her sister.) we got a second look at the camper, a third look. we looked at all the others. The baby got hungry so I brought him in the van to eat, the girls watched a little "Wreck it Ralph" on the DVD player - and Aaron never came out. When Macsen finished eating I sent the girls to tear their dad away from the store - thinking he must be looking at all the MRE's and other survivalist supplies. He comes out and starts the van. I say "I really like this one. I can actually see us in it." He agrees, fills me in on what he and the owner discussed - financing options,. Etc. I tell him I am worried someone will buy it so he nonchalantly mentions we can put a hundred down to hold it - I urge him to, afraid someone will buy it and we'll have to order one - have to wait to start camping with the kids. He looks at me and pulls out the signed paperwork. Tadaa! And he laughingly says it was to be a surprise but I wouldn't stop with the questions :) love that man. Anyone who knows me knows I hate buying things - I am always afraid of making the wrong choice. We looked at dozens of other travel trailers and they all felt like someone else's. This one felt like ours from the start. Just like Aaron -he always felt like mine. We have been together almost 13 years - and married for 9. Today. Today is our 9 year anniversary. And it might sound crazy to some of you to consider your spouse just signing the paperwork and surprising you with a camper. But something told him this was the one too and he listened.
So soon, very soon (like this weekend if the girls have any say) we will be starting a new adventure - a fun one with campfires, s'mores, hikes, site seeing. We can bring it to Pensacola for M's appts and when he has to go back to CHOP they have 2 camping spots we can use so Aaron doesn't have to prowl the halls looking for a dark spot to sleep. And I think we can fit M's swing so he should be happy :)
Tuesday, March 26, 2013
Saturday, March 23, 2013
Happy half birthday!
Macsen is 6 months old!
He's had a cardiology appointment and a pediatric appointment and they both think he's looking good. He went from 11 lbs 9 oz at his Monday cardiologist appointment to 11 lbs 14 oz at his Wednesday pediatric appt - different scales I know but hoping this is the beginning of easier/more rapid weight gain for the little man. We were even able to shorten his medicine list to just 1 diuretic 2x/day instead of 2- 3x/day. He really appreciates the change and we really appreciate not having to squeeze his little cheeks open that many times a day. That baby is a champion medicine spitter and it is a little know fact if you squeeze his cheeks open - like you're opening one of those old timey rubber change purses - he can't spit out the meds. Barbaric but effective.
He is just now on Enalipril - or as we have come to start calling it his heart vitamin- and Lasix, Vitamin D, baby aspirin. He still doesn't sleep much and I still feel like his head hurts him - he will wake from a dead sleep with a pained cry - though that could be his poor tummy. Mega dose of antibiotics during surgery may be good for keeping infection from his heart but not so great when it comes to his bowels. He has had crazy diarrhea for weeks. Time to get him on the probiotics I think.
I tried to feed him some mashed up egg yoke + breastmilk. He tried it then cried and went crazy until I gave him his bottle.
He is drinking so much better now. Not crazy amounts more - just more, and more at a time. He is also bearing a little weight on his legs - we put him in his jumper and he kicked his left leg a lot. Just not quite coordinated enough yet but he'll get it. He can lift both legs up and will grab his pants legs to pull them up close to his face - so adorable. He also sat up on my lap without being propped for a few seconds. Very proud of that. With his surgery who knows how long until his muscles are strong enough for unassisted sitting but he's getting stronger every day. His grip is getting stronger - he can snag a handful of his sisters' hair which delights them - wonder how long until that are no longer amused by this. He sleeps less during the day too - instead of at least 4 hour - 90 minute naps he'll take 4 little cat naps. He really REALLY loves music and will fall asleep watching his sisters dance to the Top 10 on Pandora.
He has also started stroking my arm when I hold him, stroking my face when I cuddle with him. That's also new - he would never be comfortable snuggling in bed with me but lately sometimes when he can't sleep any other way I can take him in with me and he will roll on his side, reach out to me, and fall asleep. This.... stops my heart. For months I have longed for this and when he does it now I am afraid to move, afraid to break the spell that is keeping him close. It can be 6 o'clock at night - his bedtime - chosen and insisted on by him of course - and I will just stay, still as a statue, scared to readjust my pillow and reaching out quietly for a sweater or teddy bear - something within arms reach- to put behind my head so I don't disturb this perfect moment with him, this gift. It will last as long as it will last- sometimes minutes, sometimes an hour and he will cry out - too hot to sleep so close anymore.
Happy Half Birthday my Littlest Love.
He's had a cardiology appointment and a pediatric appointment and they both think he's looking good. He went from 11 lbs 9 oz at his Monday cardiologist appointment to 11 lbs 14 oz at his Wednesday pediatric appt - different scales I know but hoping this is the beginning of easier/more rapid weight gain for the little man. We were even able to shorten his medicine list to just 1 diuretic 2x/day instead of 2- 3x/day. He really appreciates the change and we really appreciate not having to squeeze his little cheeks open that many times a day. That baby is a champion medicine spitter and it is a little know fact if you squeeze his cheeks open - like you're opening one of those old timey rubber change purses - he can't spit out the meds. Barbaric but effective.
He is just now on Enalipril - or as we have come to start calling it his heart vitamin- and Lasix, Vitamin D, baby aspirin. He still doesn't sleep much and I still feel like his head hurts him - he will wake from a dead sleep with a pained cry - though that could be his poor tummy. Mega dose of antibiotics during surgery may be good for keeping infection from his heart but not so great when it comes to his bowels. He has had crazy diarrhea for weeks. Time to get him on the probiotics I think.
I tried to feed him some mashed up egg yoke + breastmilk. He tried it then cried and went crazy until I gave him his bottle.
He is drinking so much better now. Not crazy amounts more - just more, and more at a time. He is also bearing a little weight on his legs - we put him in his jumper and he kicked his left leg a lot. Just not quite coordinated enough yet but he'll get it. He can lift both legs up and will grab his pants legs to pull them up close to his face - so adorable. He also sat up on my lap without being propped for a few seconds. Very proud of that. With his surgery who knows how long until his muscles are strong enough for unassisted sitting but he's getting stronger every day. His grip is getting stronger - he can snag a handful of his sisters' hair which delights them - wonder how long until that are no longer amused by this. He sleeps less during the day too - instead of at least 4 hour - 90 minute naps he'll take 4 little cat naps. He really REALLY loves music and will fall asleep watching his sisters dance to the Top 10 on Pandora.
He has also started stroking my arm when I hold him, stroking my face when I cuddle with him. That's also new - he would never be comfortable snuggling in bed with me but lately sometimes when he can't sleep any other way I can take him in with me and he will roll on his side, reach out to me, and fall asleep. This.... stops my heart. For months I have longed for this and when he does it now I am afraid to move, afraid to break the spell that is keeping him close. It can be 6 o'clock at night - his bedtime - chosen and insisted on by him of course - and I will just stay, still as a statue, scared to readjust my pillow and reaching out quietly for a sweater or teddy bear - something within arms reach- to put behind my head so I don't disturb this perfect moment with him, this gift. It will last as long as it will last- sometimes minutes, sometimes an hour and he will cry out - too hot to sleep so close anymore.
Wednesday, March 13, 2013
Home!
We are home and loving it! Macsen went crazy kicking his feet in his own bath tub. He also can't take his eyes off his sisters - watching them like he's trying to memorize their faces. He is also getting time with his Nana.
We had a fire tonight and roasted hotdogs and marshmallows. He sat in my lap watching our family - so content he fell asleep.
Thank you everyone for your support, prayers and well wishes. This journey has opened our eyes to many things but it's nothing compared to what it has done to our hearts. Mine has broken at least a hundred times since this all began last May - with every difference we discovered in Macsen's heart, every dream for his life we have had to give up, every procedure he has had to endure, every time we have had to stand helplessly by while he is hurt, every baby we have seen earn their wings... While Macsen is busy healing his heart we are busy healing ours as well. I plan on doing all those things I would regret not doing if we run out of time with each other - camping, dancing, painting, swimming, laughing, loving. Sure our bathrooms may need to be renovated and a deck on the back of the house would be great but would I regret not getting to those things? Or would I regret not spending the time and money enjoying my little family? Now I just have to convince Aaron we need a camper :) One big enough for Macsen's swing of course :)
We had a fire tonight and roasted hotdogs and marshmallows. He sat in my lap watching our family - so content he fell asleep.
Thank you everyone for your support, prayers and well wishes. This journey has opened our eyes to many things but it's nothing compared to what it has done to our hearts. Mine has broken at least a hundred times since this all began last May - with every difference we discovered in Macsen's heart, every dream for his life we have had to give up, every procedure he has had to endure, every time we have had to stand helplessly by while he is hurt, every baby we have seen earn their wings... While Macsen is busy healing his heart we are busy healing ours as well. I plan on doing all those things I would regret not doing if we run out of time with each other - camping, dancing, painting, swimming, laughing, loving. Sure our bathrooms may need to be renovated and a deck on the back of the house would be great but would I regret not getting to those things? Or would I regret not spending the time and money enjoying my little family? Now I just have to convince Aaron we need a camper :) One big enough for Macsen's swing of course :)
Sunday, March 10, 2013
Day 10 post op
We had a nice Sunday. We all slept a little better. We used the Benadryl for Macsen... decided if he could sleep he'll heal better and he does seem more like himself today. We went downstairs and a family had breakfast for everyone - pancakes, and fried eggs. We swapped out my broken phone for a new one at the Apple store - my 2nd replacement since we got them in May. It took 8 minutes though it took 2 hours to wait for our appointment... Stupid Apple stores - 10 guys standing around doing nothing but we have to wait 2 hours before they will go in the back and get a new phone off the shelf. Dumb. It's done now. And when we got back we had a little package for the kids from our sweet friends the Montoyas. Thank you guys xoxo
Big appointment day tomorrow. Hoping everything looks good and M can come off some of the meds - 2 diuretics, potassium chloride, Enalipril, aspirin, vit D and add in his Tylenol for pain and Benadryl for agitation that's 8 meds we have to get him to swallow at least 2x/day. Gross. Could be worse I know I just hate doing it to him. He always looks at me like I have betrayed him.
He enjoys his bath time and the house found him a little tub to use - he's such a rockstar he can make a pink tub look cool ;)
Big appointment day tomorrow. Hoping everything looks good and M can come off some of the meds - 2 diuretics, potassium chloride, Enalipril, aspirin, vit D and add in his Tylenol for pain and Benadryl for agitation that's 8 meds we have to get him to swallow at least 2x/day. Gross. Could be worse I know I just hate doing it to him. He always looks at me like I have betrayed him.
He enjoys his bath time and the house found him a little tub to use - he's such a rockstar he can make a pink tub look cool ;)
Saturday, March 9, 2013
Waiting to go home
We are at the Ronald McDonald house. Resting, catching up on all our lost sleep. Macsen is bathed, Jammied and out like a light in his swing. We need to wake him to give him his 5 meds due at 8 :( I dread it. He cries and gags and he's so peaceful now. He is still coughing and it still sounds very wet. It hurts him and he cries. He also is over meeting people. Like always, people here at the house remark on his cool hair and they try to talk to him. He watches them warily then cries if they get too close.
I am ready to go home. To get him comfortable and at ease again. To see the girls - missing them terribly tonight. They love it here at the RMH. They are having fun at the Cinderella Ball with their Nana. Just a few more days
I am ready to go home. To get him comfortable and at ease again. To see the girls - missing them terribly tonight. They love it here at the RMH. They are having fun at the Cinderella Ball with their Nana. Just a few more days
Friday, March 8, 2013
Day 8... Discharge!
While I attempted - and failed - to get out if bed at the RMH and head over to the hospital, two things happened. 1) It snowed. B) They had rounds and declared Macsen fit to be released back into the wild.
When we actually go is anyone's guess. Our roommate is also going. They had the same surgery on the same day with the same surgeon, right after M. She is a cutie who is one month younger and also has a a head full of hair. I was cruising the halls with Macsen and the other mom was walking with her girl and we came across the hospital chaplain. The words destined and marriage were spoken. I was quick to add that my son might want to "play the field" a bit first -- the chaplain had some funny things to say about that! We all laughed though.
Ok, so as I am writing, they are handing me paperwork that says Get Out. Woohoo! Spending the weekend at RMH, then another follow up appt Monday. So Close!
When we actually go is anyone's guess. Our roommate is also going. They had the same surgery on the same day with the same surgeon, right after M. She is a cutie who is one month younger and also has a a head full of hair. I was cruising the halls with Macsen and the other mom was walking with her girl and we came across the hospital chaplain. The words destined and marriage were spoken. I was quick to add that my son might want to "play the field" a bit first -- the chaplain had some funny things to say about that! We all laughed though.
Ok, so as I am writing, they are handing me paperwork that says Get Out. Woohoo! Spending the weekend at RMH, then another follow up appt Monday. So Close!
Thursday, March 7, 2013
Day 7 Post op
Macsen is getting better/ stronger everyday. He is able to eat a little better. Still about half what he normally eats which was never a lot to begin with. He is off iv fluids though so I worry he is getting enough in. They won't keep us in patient based on his weight gain/loss though which is a relief. They trust me to get help with that at home if we need it.
He had 4 attempts today to draw his blood :( none worked. His little veins are not happy. So they'll give him a break and try again tomorrow. Yay :(
Good news? We finally got a room at the Ronald McDonald house. So great because while I can't leave M, Aaron can at least get some rest in a real bed for the first time in over a week. He always gives me the sleep chair and tries to sleep in the rocking chair. When his legs go to sleep and the hospital is quiet he goes roaming for a quiet spot to crash - a bench, or recliner. So yay! He went over already to do the paperwork and also grab some dinner. He'll be back on the next shuttle with some dinner for me. Love that man.
Also, I got the results back from the creamatocrit - a process that tests the amount of calories in your breastmilk. It is used to see how many calories they need to add to bring your milk up to 27 calories.
Well my milk averages 30 calories - with some testing 34 calories :) I am happy. Macsen has been getting very high calorie milk so it's not the reason he is growing so slowly. Phew. I am hoping once he recuperates from this last surgery he can start gaining again.
He had 4 attempts today to draw his blood :( none worked. His little veins are not happy. So they'll give him a break and try again tomorrow. Yay :(
Good news? We finally got a room at the Ronald McDonald house. So great because while I can't leave M, Aaron can at least get some rest in a real bed for the first time in over a week. He always gives me the sleep chair and tries to sleep in the rocking chair. When his legs go to sleep and the hospital is quiet he goes roaming for a quiet spot to crash - a bench, or recliner. So yay! He went over already to do the paperwork and also grab some dinner. He'll be back on the next shuttle with some dinner for me. Love that man.
Also, I got the results back from the creamatocrit - a process that tests the amount of calories in your breastmilk. It is used to see how many calories they need to add to bring your milk up to 27 calories.
Well my milk averages 30 calories - with some testing 34 calories :) I am happy. Macsen has been getting very high calorie milk so it's not the reason he is growing so slowly. Phew. I am hoping once he recuperates from this last surgery he can start gaining again.
Wednesday, March 6, 2013
Day 6 midday update
So little man has been weaned off the oxygen and is doing ok. His X-ray from 4 am - yes, 4 am EVERYDAY- looked a little wetter so they added another dose of his diuretic lasix. They have been trying to put him on oxy codone for pain - citing his irritability for increased pain management. But they don't know our little man - he's pissy because he doesn't like them, is not impressed with their hospitality, and he wants to go home. He settles down when they go away and leave him alone. We have also been trying to get him out of the room more - we had to hook him up to an oxygen tank and a portable heart monitor but he loved it. It also tired him out so he can sleep a little deeper.
We requested Genetics to find out exactly what his tests said and found out in the process that although they did test for CHARGE and he was negative they never actually tested for NOONANS. Ugh. So they are putting it through and hopefully we won't have to wait the 10 weeks for these results. The director of the CHOP Genetics program doesn't think he has it but he does have that fat behind his neck. So, where we thought everything was done it wasn't. Crazy. These people screw things up like everyone else does. So now we wait to see if he has any syndromes associated with his heart defect. Sigh. Thought we were past this.
He is eating pretty well and is currently snoozing in my arms.
We requested Genetics to find out exactly what his tests said and found out in the process that although they did test for CHARGE and he was negative they never actually tested for NOONANS. Ugh. So they are putting it through and hopefully we won't have to wait the 10 weeks for these results. The director of the CHOP Genetics program doesn't think he has it but he does have that fat behind his neck. So, where we thought everything was done it wasn't. Crazy. These people screw things up like everyone else does. So now we wait to see if he has any syndromes associated with his heart defect. Sigh. Thought we were past this.
He is eating pretty well and is currently snoozing in my arms.
Day 6 P O
4 am and Macsen had his daily X-ray...
Always 4 am and they always show up just After he has fallen asleep.
At 3 I woke up b/c M was crying. The nurse and Aaron were trying to get him to eat - he has really stopped wanting to eat much. He refused so they put in his paci's- he kept fussing so I got up. He's in his swing, eyes closed, mouth firmly shut. I sit on the floor in front of the swing, take the bottle, put it to his lips and he takes it hungrily - never opening his eyes but he KNEW it was me. Crazy baby
Always 4 am and they always show up just After he has fallen asleep.
At 3 I woke up b/c M was crying. The nurse and Aaron were trying to get him to eat - he has really stopped wanting to eat much. He refused so they put in his paci's- he kept fussing so I got up. He's in his swing, eyes closed, mouth firmly shut. I sit on the floor in front of the swing, take the bottle, put it to his lips and he takes it hungrily - never opening his eyes but he KNEW it was me. Crazy baby
Tuesday, March 5, 2013
Day5 Post Op
Macsen smiled at us today! Incredibly happy. I am getting my baby back.
He ate pretty well overnight and the swing my sister bought was a serious Godsend...or Gabsend!! He was so agitated after the move from the room in CICU - he is such a funny baby, very uncomfortable with changes in his surroundings at bedtime and changes to his schedule. So when he saw the swing set up and we put him in it he passed out. Our nurse was afraid after his meltdown during the room change that he would have a tough night w/ inconsolable crying but Macsen really wasn't too bad. It was impossible for me to sleep though - the recliner wouldn't stay reclined, we had 2 baby's on different eating/crying/fussy/med times so Gabriella's mom and I were both up all night. Aaron slept on a recliner in the lounge.
He had his iv fluids cut off and his meds are now all oral. He still has the cannula in giving him an oxygen boost and all the EKG wires - such a pain come diaper change time. He looks exhausted, his eyes look tired to me. He needs to get back to some solid sleep which is nearly impossible in a hospital. So noisy, bustling, focused on pushing meds and ordering tests but not rest.
Have a hard ass(apologies) nurse today - she's training someone so is probably even more picky then normal - harassing us about how many pieces if furniture is in the room, fussing at Aaron for getting Macsen his milk instead of waiting for them to - breast milk is considered a medicine here apparently- giving me grief about wanting to change his pulse ox probe even though I feel his isn't picking up well... Ugh. I am too tired and my sense of humour is wearing thin - bits of "complaining Alex" showing through the worn spots. The iv infiltration has shaken my belief that everyone here is paying attention...
There are some amazing nurses though - we love most of them and have had several of the ones we loved from last surgery which is nice. They went above and beyond yesterday trying to find us some of M's 7th generation diapers. He ran out and the Huggies the hospital had irritated his legs where they touch him and he now has a scab there:( they didn't find his diapers but did find some pure and natural ones that haven't bothered him yet.
Aaron is doing laundry. There are machine's in the 8th floor.
I hope we get a good nurse tonight.
He ate pretty well overnight and the swing my sister bought was a serious Godsend...or Gabsend!! He was so agitated after the move from the room in CICU - he is such a funny baby, very uncomfortable with changes in his surroundings at bedtime and changes to his schedule. So when he saw the swing set up and we put him in it he passed out. Our nurse was afraid after his meltdown during the room change that he would have a tough night w/ inconsolable crying but Macsen really wasn't too bad. It was impossible for me to sleep though - the recliner wouldn't stay reclined, we had 2 baby's on different eating/crying/fussy/med times so Gabriella's mom and I were both up all night. Aaron slept on a recliner in the lounge.
He had his iv fluids cut off and his meds are now all oral. He still has the cannula in giving him an oxygen boost and all the EKG wires - such a pain come diaper change time. He looks exhausted, his eyes look tired to me. He needs to get back to some solid sleep which is nearly impossible in a hospital. So noisy, bustling, focused on pushing meds and ordering tests but not rest.
Have a hard ass(apologies) nurse today - she's training someone so is probably even more picky then normal - harassing us about how many pieces if furniture is in the room, fussing at Aaron for getting Macsen his milk instead of waiting for them to - breast milk is considered a medicine here apparently- giving me grief about wanting to change his pulse ox probe even though I feel his isn't picking up well... Ugh. I am too tired and my sense of humour is wearing thin - bits of "complaining Alex" showing through the worn spots. The iv infiltration has shaken my belief that everyone here is paying attention...
There are some amazing nurses though - we love most of them and have had several of the ones we loved from last surgery which is nice. They went above and beyond yesterday trying to find us some of M's 7th generation diapers. He ran out and the Huggies the hospital had irritated his legs where they touch him and he now has a scab there:( they didn't find his diapers but did find some pure and natural ones that haven't bothered him yet.
Aaron is doing laundry. There are machine's in the 8th floor.
I hope we get a good nurse tonight.
Monday, March 4, 2013
Stepdown! Getting close now!
Hemi-Fontan Post-Op Day 4 Evening
So... the morning didn't start off too well, but the good news is the "infiltrated" line in his left arm was IV fluids and looks to be well on the way back to normal.
We have been transferred to the Cardiac Care Unit (CCU) and out of the CICU. STEPDOWN! For those who counted, we spent 5 days in the CICU for the Norwood and then 5 more in the CCU. This time was 4, and now...? Aiming for just 4 more but of course it's completely in God's hands. We know we have been extremely blessed to be going through this so (relatively) quickly. Prayers are working!
As the day wears on Mr. M has been feeding more, fussing less, and de-swelling in the arm area.
Here is a pic with the wonderful Dr. Chitra Ravishankar. Her and Dr. Desiree Fleck check on us every day. =D
Might Mac is sleeping now and his heartbeat is 113, with Ox at 85%.
THAT is his normal!
So... the morning didn't start off too well, but the good news is the "infiltrated" line in his left arm was IV fluids and looks to be well on the way back to normal.
We have been transferred to the Cardiac Care Unit (CCU) and out of the CICU. STEPDOWN! For those who counted, we spent 5 days in the CICU for the Norwood and then 5 more in the CCU. This time was 4, and now...? Aiming for just 4 more but of course it's completely in God's hands. We know we have been extremely blessed to be going through this so (relatively) quickly. Prayers are working!
As the day wears on Mr. M has been feeding more, fussing less, and de-swelling in the arm area.
Here is a pic with the wonderful Dr. Chitra Ravishankar. Her and Dr. Desiree Fleck check on us every day. =D
Might Mac is sleeping now and his heartbeat is 113, with Ox at 85%.
THAT is his normal!
Day4- 4am
Ugh...! Just ugh! :(
Little man is finally asleep. He's been fitful tonight - tough to get to sleep, not sleeping long. Around 2:30 am he cried out - went to him and he was eating his nasal cannula. No nurse in site even though his sats had dropped and he was agitated. Got his bottle and he slowly ate 1 ounce. The whole time he had his left leg pulled up to his belly... Just the left and he wasn't kicking it, just holding it tucked up. (He did the same thing last surgery when he had the PICC line in his right leg - it hurt him and he kept that leg bent and close to his body.) I knew something was hurting him on that side. Asked the nurse for more milk - they keep my breastmilk under lock and key- and a diff type of bottle to see if he could eat easier out of a DrBrowns. She brought everything in and I asked her to look at him - showed her his tucked leg. We checked his leg, foot, tummy... Nothing. Chalked it up to maybe that central chest tube hurting him. She left. He couldn't sleep. His pulse has been up for about 12 hours - in the 140s- 150s when they had been in the low 120s. No one was concerned as it falls in the normal range, but we knew this wasn't normal for him.
I heated his milk... 3:30 am. He's still awake and still tucking that leg up.
4 am getting agitated so I reposition him...rolling him on his right... Mindful of his RA wire, his chest tube, pulse ox, oxygen cannula, placed his left arm on his side - it was still wrapped and boarded from surgery - an arterial line and a PIV line with his fluids. His upper arm sticking out above the board was rock hard and twice normal size. I rushed for the nurse and she got the doc. His iv had gone bad and had been pumping all the fluid into the tissue of his arm, not his vein. It's a grade 4 - whatever that means to the docs. To me it means his hand and arm were purple and so swollen they felt made of stone. Cold stone and it had a bright white area like a big blister where the iv went in. It looked excruciating. We are having someone from ortho and plastics to look at it - see if there will be lasting damage.
They took out the iv but had to leave his arterial line in until after his chest tube and RA wire come out. I just want everything off that hand now! That was the hand he would chew on... And twirl his hair... And grab his ear in his sleep.
I feel awful the signs were there and I missed them... Please don't let him have lasting damage from this:(
I hate this. so mad at myself... And mad at the nurses... And myself again.
Little man is finally asleep. He's been fitful tonight - tough to get to sleep, not sleeping long. Around 2:30 am he cried out - went to him and he was eating his nasal cannula. No nurse in site even though his sats had dropped and he was agitated. Got his bottle and he slowly ate 1 ounce. The whole time he had his left leg pulled up to his belly... Just the left and he wasn't kicking it, just holding it tucked up. (He did the same thing last surgery when he had the PICC line in his right leg - it hurt him and he kept that leg bent and close to his body.) I knew something was hurting him on that side. Asked the nurse for more milk - they keep my breastmilk under lock and key- and a diff type of bottle to see if he could eat easier out of a DrBrowns. She brought everything in and I asked her to look at him - showed her his tucked leg. We checked his leg, foot, tummy... Nothing. Chalked it up to maybe that central chest tube hurting him. She left. He couldn't sleep. His pulse has been up for about 12 hours - in the 140s- 150s when they had been in the low 120s. No one was concerned as it falls in the normal range, but we knew this wasn't normal for him.
I heated his milk... 3:30 am. He's still awake and still tucking that leg up.
4 am getting agitated so I reposition him...rolling him on his right... Mindful of his RA wire, his chest tube, pulse ox, oxygen cannula, placed his left arm on his side - it was still wrapped and boarded from surgery - an arterial line and a PIV line with his fluids. His upper arm sticking out above the board was rock hard and twice normal size. I rushed for the nurse and she got the doc. His iv had gone bad and had been pumping all the fluid into the tissue of his arm, not his vein. It's a grade 4 - whatever that means to the docs. To me it means his hand and arm were purple and so swollen they felt made of stone. Cold stone and it had a bright white area like a big blister where the iv went in. It looked excruciating. We are having someone from ortho and plastics to look at it - see if there will be lasting damage.
They took out the iv but had to leave his arterial line in until after his chest tube and RA wire come out. I just want everything off that hand now! That was the hand he would chew on... And twirl his hair... And grab his ear in his sleep.
I feel awful the signs were there and I missed them... Please don't let him have lasting damage from this:(
I hate this. so mad at myself... And mad at the nurses... And myself again.
Sunday, March 3, 2013
Day 3 post OP pm update
Macsen had 3 echos today and 1 X-ray. Sweet baby was so good during all of them. He totally slept through the last echo but kept hitting the doctor's arm in his sleep.
We have been waiting all day to hear how his heart looks. They just rounded and said there is good flow through both pulmonary arteries! Yay! A little narrowing of his LPA and his squeeze isn't optimal but overall looks good!wish they could have told us earlier and saved me the 40 new grey hairs that have grown in over the past 12 uncertain hours. He is also off the high flow oxygen which is great - that thing is intense blowing up your nose. They suctioned a lot of gunk out of his upper airway today too. He would really start to choke and panic - his arms and legs flailing, eyes wide. Scary.
His lung sounds better and better. The nurses do PT - beat on his chest- every 2 to 3 hours to help it and he loves it. He relaxes and goes to sleep - all while they have him hunched forward - his newly sewn chest padded with a blanket and resting on their hand while their other hand pats his back and chest. Doesn't look comfy but it must feel good to him.
After talking to the rounding docs one mentioned... And I am not going to hold my breath...MAYBE going to step down tomorrow. What? So hopefully that means all his extra appendages will be taken out in the am. So ready for my baby to be able to wear clothes. He hates being naked. Thank goodness for his Aden and Anais bamboo blankets. He loves them - he strokes them in his sleep. That and twirls his hair... I was happy to see him start doing that today too... Getting my baby back little by little. I swear he almost smiled. Sigh. Relief. Happy. Hoping nothing wacky happens overnight and we all get a good rest.
Tomorrow we have to work on eating. He won't eat much - today I was able to get 15 ml in with a syringe. He swallowed it .1ml at a time - he just seems unable to navigate the bottle anymore... He goes for it but gives up after 2 or 3 sucks. Hoping he's just exhausted and perks up tomorrow ready to eat.
We have been waiting all day to hear how his heart looks. They just rounded and said there is good flow through both pulmonary arteries! Yay! A little narrowing of his LPA and his squeeze isn't optimal but overall looks good!wish they could have told us earlier and saved me the 40 new grey hairs that have grown in over the past 12 uncertain hours. He is also off the high flow oxygen which is great - that thing is intense blowing up your nose. They suctioned a lot of gunk out of his upper airway today too. He would really start to choke and panic - his arms and legs flailing, eyes wide. Scary.
His lung sounds better and better. The nurses do PT - beat on his chest- every 2 to 3 hours to help it and he loves it. He relaxes and goes to sleep - all while they have him hunched forward - his newly sewn chest padded with a blanket and resting on their hand while their other hand pats his back and chest. Doesn't look comfy but it must feel good to him.
After talking to the rounding docs one mentioned... And I am not going to hold my breath...MAYBE going to step down tomorrow. What? So hopefully that means all his extra appendages will be taken out in the am. So ready for my baby to be able to wear clothes. He hates being naked. Thank goodness for his Aden and Anais bamboo blankets. He loves them - he strokes them in his sleep. That and twirls his hair... I was happy to see him start doing that today too... Getting my baby back little by little. I swear he almost smiled. Sigh. Relief. Happy. Hoping nothing wacky happens overnight and we all get a good rest.
Tomorrow we have to work on eating. He won't eat much - today I was able to get 15 ml in with a syringe. He swallowed it .1ml at a time - he just seems unable to navigate the bottle anymore... He goes for it but gives up after 2 or 3 sucks. Hoping he's just exhausted and perks up tomorrow ready to eat.
Day3 post op
Finally got to hold my bub. He was moaning and agitated- nothing like 2 days ago - and he still has all his lines and rubes but they carefully bundled him and put him in my arms. His eyes got heavy and he went to sleep in less than a minute - he just wanted to be held.
His left lung is most probably collapsed. The X-ray this morning looked totally white on that side:( Because he is so hard to get an iv in they are leaving his central lines in just in case they need them in a hurry. He does look better but not perfect DrBrunetti said hopefully tomorrow all his lines/tubes can come out.
They are diuresing him - giving him 2 types of meds to make him pee- and suctioning lots of crud from his throat. It will even choke him sometimes and he panics because he can't breathe.
His bandage came off his chest incision and it looks really good - should heal nicely.
He is still on high flow oxygen - working with just 1 lung is tough. Once they get that straightened out he may be able to come off it. Good because the sticky dots makes his face break out. His face is a mess - all the rubbing he did in reaction to the morphine and other pain meds really messed his face up. His face swelled so much and then the rubbing... Looks like he was burned all most. They won't let me put anything on it because greasy lotions will make it impossible to use tape to hold his cannula in. I did put a little breastmilk on it - crazy I know - but the crazier thing is it already looks 50% better an hour later.
He also ate a little - an ounce - but I was happy. His mouth is so parched his lips are cracking and he kept pursing them... They must hurt.
His left lung is most probably collapsed. The X-ray this morning looked totally white on that side:( Because he is so hard to get an iv in they are leaving his central lines in just in case they need them in a hurry. He does look better but not perfect DrBrunetti said hopefully tomorrow all his lines/tubes can come out.
They are diuresing him - giving him 2 types of meds to make him pee- and suctioning lots of crud from his throat. It will even choke him sometimes and he panics because he can't breathe.
His bandage came off his chest incision and it looks really good - should heal nicely.
He is still on high flow oxygen - working with just 1 lung is tough. Once they get that straightened out he may be able to come off it. Good because the sticky dots makes his face break out. His face is a mess - all the rubbing he did in reaction to the morphine and other pain meds really messed his face up. His face swelled so much and then the rubbing... Looks like he was burned all most. They won't let me put anything on it because greasy lotions will make it impossible to use tape to hold his cannula in. I did put a little breastmilk on it - crazy I know - but the crazier thing is it already looks 50% better an hour later.
He also ate a little - an ounce - but I was happy. His mouth is so parched his lips are cracking and he kept pursing them... They must hurt.
Day 3 post op am
Last night was much better than the night before. Macsen is now just on Tylenol and they have turned off Milrinone and put him on oral Enalipril. He has a lot of secretions they are having to suction and his left lung still looks bad but chest pt should help. Chest X-ray and echo today showed no fluid on his lung so they won't have to put another chest tube in. Still waiting for rounds - it's the weekend and they take longer- to find out the plan for the day. Hopefully it involves removing some tubes and wires so I can hold my baby today.
He looks better - not as swollen. You can actually see the whites of his eyes!
He looks better - not as swollen. You can actually see the whites of his eyes!
Saturday, March 2, 2013
Day 2 Postop pm update
Macsen seems to be doing better. He's not inconsolable but is definitely not comfy. His left lung is still bad and his head is so puffy his eyes are little slits... hard to tell when they are open or closed. He had a little bit of a bad turn today - throwing meds at him all day finally caught up to him and he got so knocked out he wasn't breathing well. So now they aren't giving him dilauded or morphine anymore and I'm not sure what the next med will be. They are giving him Tylenol around the clock - suppository which he is rightly outraged by.
He was awake a little more - listening to me tell him stories between bouts of trying to rip the cannula off his face. I joked to the nurse Sherri that when my friends brag about how their 5 month old babies were sitting up or standing I can say "oh yeah? Well M can rip a high flow cannula off his face in 5 seconds flat. Top that! Didn't think so." Silly the things you say in the midst of losing it a little.
So now he's quiet-ish. Aaron is jiggling and jostling the crib and Macsen is calm - mostly.but not crying so that's good.
We have been loving FaceTime with the girls every night. They are funny, silly and just amazing at getting our minds off all this. Tonight K was dressed in her cheetah footie Jammie's while C held out a hula hoop for her to jump through - like a circus cat. Hysterical. That's what we are doing in the picture. Laughing at their antics. We miss them and hate to hear "when are you coming home" because we can't say. Hopefully soon.
And we saw Caelen roaming the halls - pulling his Mom or Dad on the oxygen tubing leash. He is a mover that one! Please keep him in your prayers as he is still battling that plastic bronchitis and his mom has an appointment with the transplant team on Monday.
He was awake a little more - listening to me tell him stories between bouts of trying to rip the cannula off his face. I joked to the nurse Sherri that when my friends brag about how their 5 month old babies were sitting up or standing I can say "oh yeah? Well M can rip a high flow cannula off his face in 5 seconds flat. Top that! Didn't think so." Silly the things you say in the midst of losing it a little.
So now he's quiet-ish. Aaron is jiggling and jostling the crib and Macsen is calm - mostly.but not crying so that's good.
We have been loving FaceTime with the girls every night. They are funny, silly and just amazing at getting our minds off all this. Tonight K was dressed in her cheetah footie Jammie's while C held out a hula hoop for her to jump through - like a circus cat. Hysterical. That's what we are doing in the picture. Laughing at their antics. We miss them and hate to hear "when are you coming home" because we can't say. Hopefully soon.
And we saw Caelen roaming the halls - pulling his Mom or Dad on the oxygen tubing leash. He is a mover that one! Please keep him in your prayers as he is still battling that plastic bronchitis and his mom has an appointment with the transplant team on Monday.
Day 2 post op lunchtime update
Still trying to effectively manage M's pain. They continued to give him Morphine because after adding the atavan he seemed to settle but he keeps itching his face and is now developing a lot of upper airway congestion which can be caused by morphine. So they are now officially stopping it and putting him on dilauded - another opiate so I hope he doesn't react to it too. Do far the Benadryl seems to help him just as much as the big hitter narcotics but wears off after a few hours. Parts of his left lung have collapsed which would be helped a lot if we could hold him and pat his back - bounce him and his pain was controlled enough so he could really cough. It hurts him too much now so he's keeping all the junk in his lungs. Still has the lines into his heart and his chest tube so none of the above is allowed.maybe tomorrow.
He kept ripping his nasal oxygen off so we are trying to do the same thing with the mask.
He kept ripping his nasal oxygen off so we are trying to do the same thing with the mask.
Morning 2 post op
M slept fitfully last night. The nurse was really great at shushing him before I woke up so I actually got about 3 straight hours of sleep. Doesn't sound awesome to my preMacsen self but sounds like the best sleep ever to the current version of me. He is on morphine, atavan, dexsomething and none of those were keeping him comfortable anymore so what do they try? Benadryl. Knocked him right out. Crazy baby! He's been sleeping almost an hour. Phew.
He's had another X-ray around 5 am and is on 2 diuretics. Still has chest tube and arterial line, RA line so still not allowed to hold him - though when the nurses get desperate enough to calm him they bend that rule with lots of supervision- nasal cannula with o2. Ready to get that chest tube out. It's not really draining much and it has to hurt coming out of his chest and bouncing around everytime he moves. The same with all the lines.
Still waiting for rounds to hear the plan. They will probably have to place another iv if they take that RA out. They need to be able to give him stuff in a hurry if he starts to go downhill but the booger has tiny veins - pretty common in these babies and they'll try a few times to stick him but can't get a vein. Torturous for him. Today his bandage should come off too.
He's had another X-ray around 5 am and is on 2 diuretics. Still has chest tube and arterial line, RA line so still not allowed to hold him - though when the nurses get desperate enough to calm him they bend that rule with lots of supervision- nasal cannula with o2. Ready to get that chest tube out. It's not really draining much and it has to hurt coming out of his chest and bouncing around everytime he moves. The same with all the lines.
Still waiting for rounds to hear the plan. They will probably have to place another iv if they take that RA out. They need to be able to give him stuff in a hurry if he starts to go downhill but the booger has tiny veins - pretty common in these babies and they'll try a few times to stick him but can't get a vein. Torturous for him. Today his bandage should come off too.
Friday, March 1, 2013
Day 1 post op
Some good. Some bad. Another baby just out of surgery needed our spot on the pod so we were moved to our own room- not step down - just our own room and bathroom. Knew that chocolate for the nurses would pay off! They could have moved another baby but decided Macsen was more ready :)
No sooner had we gotten here then Macsen started really suffering. Crying, repeatedly rubbing his face, getting all worked up and setting off all the alarms. Not good when you have fresh stitches in your heart.
His nurse thought he might be having a reaction to morphine as additional doses just made him worse. So they gave him something else. Didn't work eithr so they gave him sedation. We had to stop the screaming so they let Daddy hold him which really helped but they were terrified because he still has an RA line - a line going directly into his right atrium. If he rips it out he can rip a hole in his heart. He has been almost impossible to get an iv in- after the 2nd attempt today they gave up hence why they are leaving the line in - for access. Anyways, we had to stop the crying and Daddy did that while they let him. Exhausted. All of us. Oh wait.... Still crying.
Update: over 4 hrs of inconsolable screaming and our nurse had to go above the NP and fellow to the attending and get our poor babe something to help him which was Ativan. Love our nurse. He is peaceful now but what a tough day for our little guy. I have never felt more helpless. Holding him wasn't really safe and no amount of patting, pacifier, singing, humming, white noise, pumping his legs - none of that could touch the pain he was feeling. So incredibly hard. Praying that was the worst of it and he will start adjusting to all the extra pressure in his head. Praying we don't ever have to put him through that kind of pain again. Please God.
No sooner had we gotten here then Macsen started really suffering. Crying, repeatedly rubbing his face, getting all worked up and setting off all the alarms. Not good when you have fresh stitches in your heart.
His nurse thought he might be having a reaction to morphine as additional doses just made him worse. So they gave him something else. Didn't work eithr so they gave him sedation. We had to stop the screaming so they let Daddy hold him which really helped but they were terrified because he still has an RA line - a line going directly into his right atrium. If he rips it out he can rip a hole in his heart. He has been almost impossible to get an iv in- after the 2nd attempt today they gave up hence why they are leaving the line in - for access. Anyways, we had to stop the crying and Daddy did that while they let him. Exhausted. All of us. Oh wait.... Still crying.
Update: over 4 hrs of inconsolable screaming and our nurse had to go above the NP and fellow to the attending and get our poor babe something to help him which was Ativan. Love our nurse. He is peaceful now but what a tough day for our little guy. I have never felt more helpless. Holding him wasn't really safe and no amount of patting, pacifier, singing, humming, white noise, pumping his legs - none of that could touch the pain he was feeling. So incredibly hard. Praying that was the worst of it and he will start adjusting to all the extra pressure in his head. Praying we don't ever have to put him through that kind of pain again. Please God.
Good morning sunshine
Macsen had an uneventful night. He ate 120 ml this morning. A record for him. And he briefly opened his eyes! His Foley cath is out / he hated it. Who wouldn't? He is on minimal morphine and will switch to Oxy today. tylenol. Milrinone to help that right Ventricle. Dex to keep him Calm. Still has his chest tube but its not draining much. And he's still got oxygen blowing but it was turned down. he will probably get some blood today to help carry more oxygen and get him off the nasal cannula.
Now he's snugged up waiting for rounds.
Now he's snugged up waiting for rounds.
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