Max is doing well. He has just started to open an eye and move a finger after the anesthesia is wearing off. He has a morphine drip to help with pain and will likely need that help for several days. His incision goes half-way across his stomach, but it's a welcome sight if it means he'll be able to eat and grow! (Troy took a couple of pics which I'll upload when we get home.)
Ella and Alex are with friends and we're staying with Max for now.
Friday, June 4, 2010
Surgery ends...
Max is out of surgery. We should see him shortly. He did amazingly well. Surgeon repaired a perforation and there are several others which appear to have healed themselves. He will need another surgery down the road, has an ostomy (sp?) for now. But that can wait until a week or so before he goes home.
in surgery now...
Max went down for surgery about 1:45. He had spent the morning snuggling with Mommy and Daddy and was very relaxed and calm when he left us. His respiratory is the best it's been since he was born.
The nurse just call us (around 3:00) from the OR to say Max was doing well. She estimates another 30-45 minutes, so we're hoping that's a good sign.
More news as we get it...
The nurse just call us (around 3:00) from the OR to say Max was doing well. She estimates another 30-45 minutes, so we're hoping that's a good sign.
More news as we get it...
Thursday, June 3, 2010
Twas the night before surgery...
Max has finished his latest blood transfusion. He's resting comfortably and will have some final blood work and x-rays in the morning.
I went back up for a bit tonight, when they learned his hematocrit (red blood cell count) was lower than they expected. I hate to say I told you so, but I've been saying for 2 days now that he looked a little pale. The doctors only take his blood count every few days, because taking the blood to check everything can lower his blood cell count which is so important. It was 39 the last time they checked, and they anticipated today it would be between 33 and 36. His blood count was 28! Mommy may not be a doctor, but I know my boy and his skin tone!
We had such wonderful snuggle time this morning! He grabbed onto the side of my neck and just snoozed for a couple of hours. It's truly the most wonderful time of my day, and so weird do only be doing it for a few hours a day at the most. You take holding a newborn for granted, until you can't do it whenever you want. I spent most of that time in tears, thinking how much I enjoy this time, and how I hope to have so many more days and nights with him in my arms, at home, where he should be. It's like everything we did today made me wonder if it would be Max's last. I'm so grateful for every moment with him. I can only imagine that tomorrow will be that much tougher...
Troy and I will be with him all day tomorrow. We plan to be there first thing in the morning so we can spend a couple of hours holding him. It will be at least a couple of days before we'll be able to hold him after surgery. We appreciate all your wonderful thoughts and prayers. Will update as we can tomorrow.
I went back up for a bit tonight, when they learned his hematocrit (red blood cell count) was lower than they expected. I hate to say I told you so, but I've been saying for 2 days now that he looked a little pale. The doctors only take his blood count every few days, because taking the blood to check everything can lower his blood cell count which is so important. It was 39 the last time they checked, and they anticipated today it would be between 33 and 36. His blood count was 28! Mommy may not be a doctor, but I know my boy and his skin tone!
We had such wonderful snuggle time this morning! He grabbed onto the side of my neck and just snoozed for a couple of hours. It's truly the most wonderful time of my day, and so weird do only be doing it for a few hours a day at the most. You take holding a newborn for granted, until you can't do it whenever you want. I spent most of that time in tears, thinking how much I enjoy this time, and how I hope to have so many more days and nights with him in my arms, at home, where he should be. It's like everything we did today made me wonder if it would be Max's last. I'm so grateful for every moment with him. I can only imagine that tomorrow will be that much tougher...
Troy and I will be with him all day tomorrow. We plan to be there first thing in the morning so we can spend a couple of hours holding him. It will be at least a couple of days before we'll be able to hold him after surgery. We appreciate all your wonderful thoughts and prayers. Will update as we can tomorrow.
Day before surgery
Max looks pretty good this morning. The neo-natologist is "tinkering" a bit with his vent settings, since his x-ray was a little more cloudy and his blood gas not quite as good. But, he still feels lungs are in best shape yet and we are ready for bowel surgery. Max will get blood transfusion this afternoon and then start IV antibiotics to prepare for surgery. He's up to 4 lbs. 9 ozs... which the doctor insists includes some fluid retention, and not actual weight gain.
Wednesday, June 2, 2010
Surgery scheduled
Max's bowel surgery is 1pm Friday.
We don't know exactly what will happen once they get in there. It's exploratory, because they can only tell from the films that there is a blockage a short way up in the bowel which stops the dye from getting through any further. That could be the only problem, or the whole bowel could be a disaster above that. So they'll go in fix that blockage point, pull out ALL of his intestines and run for other problems and go from there.
It could take one hour or many hours. If it's just the one blockage, survival rate is 90% percent, damage beyond that drops the chances. Biggest risks are his respiratory because his lungs are so immature. They are the strongest this week that they've ever been, so that's a plus. The neo-natologist says "this is our window" so we're going.
Next big risk is blood loss. The bowels can be a very bloody surgery and when you're that tiny, you don't have much blood to begin with. Max will get another blood transfusion tomorrow afternoon to prep him for the surgery. They will also take special radiated blood from the NICU specifically for him to the surgery in case it's needed. Max will leave the NICU with his bedside nurse, respiratory therapist, nurse practitioner and a neo-natologist as well as the pediatric surgeon and pediatric anesthesiologist. He will be taken directly to a surgical suite which is heated to about 98 degrees to keep his body warm, since he can't control that on his own.
Max's bedside nurse is Charlotte and we love her. He has had so many nurses already, but it's great that Charlotte started a shift with him today and will work with him the next 3 days as well. That gets us through surgery and his first day of recovery. She hopes to be able to call us from the OR to let us know what the surgeon has found, what's being done, etc... but it all depends on how busy the OR becomes and is Max needs her constant attention. We may be flying blind and just waiting for the surgeon to come up and let us know the outcome.
Once the surgery is complete Max will come directly back to his room in the NICU for recovery, since it's the best spot for the needs of his tiny body.
This was not the choice we hoped to make, but it's our last hope to save Max and get him moving forward. His bowels will not heal with out surgery and he will starve eventually if we can't get food into him, so we have to try this. Friday will be an excruciating day for us. Letting them wheel away our baby and knowing that he may not come back is unbearable, but we hope this surgery will help Max and take us a step closer to getting him healthy and home.
Thanks for the thoughts and prayers, keep 'em coming! We'll try to update as often as we can on Friday.
We don't know exactly what will happen once they get in there. It's exploratory, because they can only tell from the films that there is a blockage a short way up in the bowel which stops the dye from getting through any further. That could be the only problem, or the whole bowel could be a disaster above that. So they'll go in fix that blockage point, pull out ALL of his intestines and run for other problems and go from there.
It could take one hour or many hours. If it's just the one blockage, survival rate is 90% percent, damage beyond that drops the chances. Biggest risks are his respiratory because his lungs are so immature. They are the strongest this week that they've ever been, so that's a plus. The neo-natologist says "this is our window" so we're going.
Next big risk is blood loss. The bowels can be a very bloody surgery and when you're that tiny, you don't have much blood to begin with. Max will get another blood transfusion tomorrow afternoon to prep him for the surgery. They will also take special radiated blood from the NICU specifically for him to the surgery in case it's needed. Max will leave the NICU with his bedside nurse, respiratory therapist, nurse practitioner and a neo-natologist as well as the pediatric surgeon and pediatric anesthesiologist. He will be taken directly to a surgical suite which is heated to about 98 degrees to keep his body warm, since he can't control that on his own.
Max's bedside nurse is Charlotte and we love her. He has had so many nurses already, but it's great that Charlotte started a shift with him today and will work with him the next 3 days as well. That gets us through surgery and his first day of recovery. She hopes to be able to call us from the OR to let us know what the surgeon has found, what's being done, etc... but it all depends on how busy the OR becomes and is Max needs her constant attention. We may be flying blind and just waiting for the surgeon to come up and let us know the outcome.
Once the surgery is complete Max will come directly back to his room in the NICU for recovery, since it's the best spot for the needs of his tiny body.
This was not the choice we hoped to make, but it's our last hope to save Max and get him moving forward. His bowels will not heal with out surgery and he will starve eventually if we can't get food into him, so we have to try this. Friday will be an excruciating day for us. Letting them wheel away our baby and knowing that he may not come back is unbearable, but we hope this surgery will help Max and take us a step closer to getting him healthy and home.
Thanks for the thoughts and prayers, keep 'em coming! We'll try to update as often as we can on Friday.
Tuesday, June 1, 2010
Triple threat...
Max has multiple things happening today.
1st was his follow up brain scan. (head ultrasound through the soft spot) We should know the results of that later today.
2nd is his barium enema. He just left me for that. They loaded him into the portable isolette with ventilator on board, as well as all his IV fluids and nutrition. He goes down to radiology for this procedure along with his nurse, his respiratory therapist, and his nurse practitioner. It should take about an hour. The films will be read by the radiologist and then his surgeon. This should help the surgeon know what to expect when he goes in later this week. We're still assuming surgery will be Friday, but not confirmed time or day yet.
3rd will be his new PICC line. He lost the old PICC line last night. This is a long-term, central IV, which goes directly to his heart. Unfortunately, Max's PICC line was pulled slightly out of position, and began infiltrating his IV nutrition and lipids (fats) into his tissue. So, it had to be removed last night. They were able to get a peripheral IV line into his foot, but only after 6 attempts. He needs a central IV line for his nutrition, meds, etc... plus a secondary line for blood and anesthesia before surgery. This is why they will place another PICC line later today. The doctor will make a small incision in his inner elbow and they will insert the PICC line into his vein up to his heart for direct access. Max is sedated for this and it will take place in the NICU. This line should last through his surgery later this week. At that time, they expect the surgeon will place a Broviak (sp??) central line. This kind of IV last even longer than the PICC line. It's inserted surgically, under the skin in his groin. A plastic ring or "port" will anchor the line under the skin and keep it in place permanently if needed. The doctor tells me some kids even go to kindergarten with the Broviak.
So, it's been a busy day, and it will only get busier. So far, Max is holding up well, and I'm doing okay too. Just crammed in some lunch while he's in radiology. Hoping he's back upstairs where I can hold his little head soon.
1st was his follow up brain scan. (head ultrasound through the soft spot) We should know the results of that later today.
2nd is his barium enema. He just left me for that. They loaded him into the portable isolette with ventilator on board, as well as all his IV fluids and nutrition. He goes down to radiology for this procedure along with his nurse, his respiratory therapist, and his nurse practitioner. It should take about an hour. The films will be read by the radiologist and then his surgeon. This should help the surgeon know what to expect when he goes in later this week. We're still assuming surgery will be Friday, but not confirmed time or day yet.
3rd will be his new PICC line. He lost the old PICC line last night. This is a long-term, central IV, which goes directly to his heart. Unfortunately, Max's PICC line was pulled slightly out of position, and began infiltrating his IV nutrition and lipids (fats) into his tissue. So, it had to be removed last night. They were able to get a peripheral IV line into his foot, but only after 6 attempts. He needs a central IV line for his nutrition, meds, etc... plus a secondary line for blood and anesthesia before surgery. This is why they will place another PICC line later today. The doctor will make a small incision in his inner elbow and they will insert the PICC line into his vein up to his heart for direct access. Max is sedated for this and it will take place in the NICU. This line should last through his surgery later this week. At that time, they expect the surgeon will place a Broviak (sp??) central line. This kind of IV last even longer than the PICC line. It's inserted surgically, under the skin in his groin. A plastic ring or "port" will anchor the line under the skin and keep it in place permanently if needed. The doctor tells me some kids even go to kindergarten with the Broviak.
So, it's been a busy day, and it will only get busier. So far, Max is holding up well, and I'm doing okay too. Just crammed in some lunch while he's in radiology. Hoping he's back upstairs where I can hold his little head soon.
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