Sunday morning we arrived to Max having seizures. They were minor, started in his right arm and eyelids then into his left arm. We don't really know what is causing them. They didn't think they were epileptic in nature. Could be due to infection (that they still don't know is there), the fever, or his lack of sleep. From Thursday to Sunday they never noticed a good sleep pattern for him. They gave him some phenobarbytol to help, and it did for a while. Between Sunday and Monday he got three doses of phenobarbytol, which is the maximum he could get, and the seizures were still breaking through. As of this morning (monday) they are currently performing an EEG, which of course he has not had a seizure to show them. They are going to get an MRI as well.
His blood cultures, spinal fluid, and respiratory aspirate are all still negative for bacterial infection...the one blood culture that came up positive has been confirmed as Staph. campi, and a contaminant. They have sent in cultures for PCR multiplex to test for viral infections.
As the doctor has explained to us this morning, he is presenting signs for sepsis. He is negative for bacterial infection, so it may still be viral, and all they can do at that point is supportive therapy, until the infection is gone.
Wouldn't you know it, as soon as they started taking off the EEG buttons he had a seizure, that's my boy.
They are trying to schedule our group meeting for Wednesday. Doug and I have requested as much of his records as are available. We want to put together a time line of events for him, and a list of questions to ask the doctors. If anyone has any ideas/questions/thoughts please feel free to let us know. As many minds as we can get on this we would like!
Monday, June 27, 2011
Saturday, June 25, 2011
back to square one...
yesterday they thought Max had a Staph infection. One of the three blood cultures they took on thursday was growing staph, however as of this morning the other two cultures were still negative. So today we are thinking the staph growth was just a contaminant in the culture. So they were thinking viral, but as of this afternoon the cultures were still negative for viral activity and his blood counts didn't support viral infection. So once again, we have no idea what is wrong with our baby. They are still treating him for bacterial infections with antibiotics, and in order to cover all bases they are also treating him for fungal infections. The heart surgeon did tell our doctors that his thymus looked small. So, once he is past all this mess going on right now they will do a full immuno-work up on him to see what type of immune response he has. Monday we are going to meet as a group with our doctors, neurology, and infectious disease...not because they think he has an infectious disease, but because they are good at plotting occurrences so that we may be able to find some pattern to the madness. We are just looking for answers right now. To be perfectly honest, we are terrified of the answers we may get. Ignorance may be bliss, but it doesn't help my baby, so we are in search of knowledge.
On a happy note, Gunner is with his Aunt Heather and Uncle Greg. from the pictures they are sending us, he seems to be having a blast!
On a happy note, Gunner is with his Aunt Heather and Uncle Greg. from the pictures they are sending us, he seems to be having a blast!
Friday, June 24, 2011
Max is sick
Max has had a rough few days. Yesterday morning I called in to check on him and they had just re-intubated him, and his heart rate was over 250 and his temp was in the 104 range. Needless to say, Doug and I drove to the hospital in record time. No one knew what was going on with him. His heart rate just sky rocketed and his work of breathing got worse, so his blood gases were terrible and his saturation levels dropped. They started running all sorts of tests.
Today test results have started to come back. His spinal fluid is negative for infection. His blood is positive for a gram positive cocci cluster, yet to be identified, however the guess is Staph of some sort (aureus or epi are the most likely culprits). He has had bloody stool so there is also some sort of bowel infection. He is being treated with two antibiotics, one for blood, one for bowel. He is still intubated, and he is on a cooling blanket to keep his fever down.
Doug and I are staying at the hospital with him. Our fabulous neighbor, Becky, took Gunner for us last night and Doug's brother, Greg, and wife, Heather are going to take him for us tonight and the rest of the weekend. He will get to go swimming, play with his baby cousin Aiden, and Roxie the wonder pup, and he will have a grand ole time.
Today test results have started to come back. His spinal fluid is negative for infection. His blood is positive for a gram positive cocci cluster, yet to be identified, however the guess is Staph of some sort (aureus or epi are the most likely culprits). He has had bloody stool so there is also some sort of bowel infection. He is being treated with two antibiotics, one for blood, one for bowel. He is still intubated, and he is on a cooling blanket to keep his fever down.
Doug and I are staying at the hospital with him. Our fabulous neighbor, Becky, took Gunner for us last night and Doug's brother, Greg, and wife, Heather are going to take him for us tonight and the rest of the weekend. He will get to go swimming, play with his baby cousin Aiden, and Roxie the wonder pup, and he will have a grand ole time.
Wednesday, June 22, 2011
6/22/11
Max is three months old today!
He is doing well. We have been back in the NICU for a week now, and so thankful. After all the major changes made before, during and after surgery it feels like we are going very very slow now! There isn't much new on a daily basis. Right now he is on all the meeds he will likely go home on. We need to get his lasix dose cut in half of what it is currently, and that is the major goal. He will probably come home on oxygen, which we are fine with...just get him home safely!
We have our fantastic primary nurse Becky back! Mr. Max gave her a hard time today, but I think he is secretly happy to see her. Occupational Therapy (OT) is going to start working on bottle feeds again. Physical Therapy (PT) is going to be working with him as well, laying in a bed for three months sets a kid back! Music Therapy has put an IPod in his bed and he responds well to the music. They are all still very confused by his breath holding spells and random fevers, so they are working with neurology to see if they can control it with medicine at all.
On Monday, Gunner's daycare was closed, so I got to stay home all day with him and we had a fantastic time! We did some shopping, went to the fabric store so that I could make some blankets for the "blankets from the heart" program and Gunner picked out some robot fabric for himself! We went to the pool, and I thought he was going to take off swimming! He was a total champ, not afraid of the water at all. We played outside with bubbles...it was just a great day, way over due!
He is doing well. We have been back in the NICU for a week now, and so thankful. After all the major changes made before, during and after surgery it feels like we are going very very slow now! There isn't much new on a daily basis. Right now he is on all the meeds he will likely go home on. We need to get his lasix dose cut in half of what it is currently, and that is the major goal. He will probably come home on oxygen, which we are fine with...just get him home safely!
We have our fantastic primary nurse Becky back! Mr. Max gave her a hard time today, but I think he is secretly happy to see her. Occupational Therapy (OT) is going to start working on bottle feeds again. Physical Therapy (PT) is going to be working with him as well, laying in a bed for three months sets a kid back! Music Therapy has put an IPod in his bed and he responds well to the music. They are all still very confused by his breath holding spells and random fevers, so they are working with neurology to see if they can control it with medicine at all.
On Monday, Gunner's daycare was closed, so I got to stay home all day with him and we had a fantastic time! We did some shopping, went to the fabric store so that I could make some blankets for the "blankets from the heart" program and Gunner picked out some robot fabric for himself! We went to the pool, and I thought he was going to take off swimming! He was a total champ, not afraid of the water at all. We played outside with bubbles...it was just a great day, way over due!
Monday, June 13, 2011
6/13/11
Max is doing well! Today has been a big day for him. They took out his pacer wires this morning as well as the stables and bandages from his incision. It doesn't look nearly as gruesome as I expected! They also stopped the last of the I.V. heart meds he was on, as well as one of his pain meds. And he is on room air! No nasal cannula, no breathing tube! His face is clear of tubing, and it is so precious! I'll post a picture later.
He is having some pretty serious withdrawals from his pain meds, so they have him on a weaning schedule using Methadone and Adavan. Once they get the withdrawal under control, they will let us start working on bottle feeds again.
The other kids are doing well. We are trying to get them back to a normal schedule. They have been with Doug's parents since Max's surgery. Doug and I left the hospital early yesterday to make it to Makayla's t-ball game! She did great, I think she is going to be a championship ball player when she gets older! We took both Gunner and Makayla out to play putt-putt golf, and then had a picnic lunch. Then Daddy had a baseball game last night.
Gunner was less than thrilled to go to daycare this morning, but he gets over that quickly, his bestie Armani is there to play with. He probably won't want to go home when daddy gets there to pick him up this afternoon.
I'm taking more vacation to be here at the hospital with Max. I'm planning to go back to work on Wednesday, as long as Max is doing as well as he is right now. Right now, it is time for me to hold my baby, so I'll post pics later!
He is having some pretty serious withdrawals from his pain meds, so they have him on a weaning schedule using Methadone and Adavan. Once they get the withdrawal under control, they will let us start working on bottle feeds again.
The other kids are doing well. We are trying to get them back to a normal schedule. They have been with Doug's parents since Max's surgery. Doug and I left the hospital early yesterday to make it to Makayla's t-ball game! She did great, I think she is going to be a championship ball player when she gets older! We took both Gunner and Makayla out to play putt-putt golf, and then had a picnic lunch. Then Daddy had a baseball game last night.
Gunner was less than thrilled to go to daycare this morning, but he gets over that quickly, his bestie Armani is there to play with. He probably won't want to go home when daddy gets there to pick him up this afternoon.
I'm taking more vacation to be here at the hospital with Max. I'm planning to go back to work on Wednesday, as long as Max is doing as well as he is right now. Right now, it is time for me to hold my baby, so I'll post pics later!
Friday, June 10, 2011
6/10/11
Max had his bronchoscopy today. They noted some swelling in his airway and gave us two choices.
#1 leave him extubated and give him a day or two of I.V. steroids. We have been trying to avoid the systemic steroids because of the muscle enlarging effects they have on his heart.
#2 give him localized steroids injected directly in the airway. He would then have to be re-intubated because the injections would initially cause an increase in the swelling of the airway. Then wait for the swelling to go down and attempt extubation again in a few days.
Doug and I chose #1, with the approval of the cardiologists. we felt that keeping him extubated was his best chance, and since the heart surgery the muscles in his heart have not had to work as hard as previously, so hopefully a few days of steroids won't have an adverse affect on him.
So right now we are sitting and anxiously watching him. He's doing well, the trick is keeping his temper down. We're trying to keep him as drugged up as possible without loosing his drive to breath. So far so good. His saturation levels look good!
We would really like for them to move us back to the NICU, we're currently in the PICU. The atmosphere of the NICU is better, cozier and such. Right now we are both just very frustrated with our doctor, we feel like he is really pushing for Max to get a Trach, which we are adamantly against. In the NICU the doctors and nurses are more familiar with Max, his temper, and Doug and I. We would be more comfortable there, right now I don't want to leave him alone.
But if we can make it through the next few days without having to put a breathing tube back in, we should be in the clear....maybe then we can go back to the NICU until discharge. We have a fabulous primary nurse in the NICU, Becky, and several others that know Max well. I would feel comfortable going back to work in the mornings if he were with them while we were gone.
#1 leave him extubated and give him a day or two of I.V. steroids. We have been trying to avoid the systemic steroids because of the muscle enlarging effects they have on his heart.
#2 give him localized steroids injected directly in the airway. He would then have to be re-intubated because the injections would initially cause an increase in the swelling of the airway. Then wait for the swelling to go down and attempt extubation again in a few days.
Doug and I chose #1, with the approval of the cardiologists. we felt that keeping him extubated was his best chance, and since the heart surgery the muscles in his heart have not had to work as hard as previously, so hopefully a few days of steroids won't have an adverse affect on him.
So right now we are sitting and anxiously watching him. He's doing well, the trick is keeping his temper down. We're trying to keep him as drugged up as possible without loosing his drive to breath. So far so good. His saturation levels look good!
We would really like for them to move us back to the NICU, we're currently in the PICU. The atmosphere of the NICU is better, cozier and such. Right now we are both just very frustrated with our doctor, we feel like he is really pushing for Max to get a Trach, which we are adamantly against. In the NICU the doctors and nurses are more familiar with Max, his temper, and Doug and I. We would be more comfortable there, right now I don't want to leave him alone.
But if we can make it through the next few days without having to put a breathing tube back in, we should be in the clear....maybe then we can go back to the NICU until discharge. We have a fabulous primary nurse in the NICU, Becky, and several others that know Max well. I would feel comfortable going back to work in the mornings if he were with them while we were gone.
Thursday, June 9, 2011
Update on Max 6/9/11
Max is scheduled to have a bronchoscopy tomorrow. To date he has had two previous bronchus, both of which helped successfully extubate him, and that is what we are hoping for this time as well.
Back story: Max was born 3/22/11. On 3/24/11 he was sent to Children's Mercy Hospital in Kansas City, MO. There it was discovered that he had two holes in his heart a VSD (ventricular septum deviation) and an ASD (atrial septum deviation). At the time, neither seemed to be immediately life threatening, and they planned to due surgery to close the holes between 6 months-12 months of age.
He did have trouble breathing due to fluid on his lungs caused by the VSD. The VSD allowed extra oxygenated blood from his left ventricle to flow to his right ventricle and then into the lungs mixing with the de-oxygenated blood. They managed this with Lasix, a diuretic drug, and then two other meds, Dijoxin and Captopril to make his heart function more efficiently. He also had "spells" in which he would hold his breath and turn blue, his O2 saturation would drop along with his heart rate. These were usually due to agitation, and the nurses learned to just leave him alone and he would usually come back out of it. Max became famous around the NICU for these little spells!
The big issue keeping us in the NICU was feeding. He simply didn't have the energy needed to take a full bottle. We eventually had a g-tube put in place to allow safe feedings at home. A G-tube is a feeding tube that goes directly to his stomach. The operation went fine and the G-tube was safely in place, however he failed extubation afterwards. They had to re-intubate him and tried a round of steroids, again failing extubation. Eventually the Ear, Nose, and Throat doctors got involved and found granulation tissue, presumably caused by the initial intubation. They removed this and started him on more steroids, along with some pain meeds which he became addicted too. They actually had to give him methadone, the drug used for heroine and Meth addicts to deal with his withdrawals, my little junkie! This worked for a while, and he was able to get the breathing tube out, but only for two weeks or so. Right about the time they were discussing discharge with us, he had to be intubated again, due to obstructed airways. This intubation was rather traumatic in that it took 10 tries (yes 10!) to get him intubated. ENT went back in, found a raw area in his airway and thought that a scab had been knocked loose during the intubation process. After this he was again put on a longer regimen of steroids and was successfully extubated! Phew!
During the Bronch they also noted that his trachea curved. An Angiogram showed that his Aorta was pushing on the trachea, but it didn't cause any compression of the trachea to block the airway. They decided that at the time of surgery, if it was causing and issue they would move the aorta out of the way. The steroid regime caused problems of it's own. The muscles of his left ventricle became enlarged due to the steroids, so all the steroids were weaned off. They also stopped his Dijoxin and Captopril at this time.
Max did well after this, he started gaining weight, was being weaned off his O2, and his pain meeds, and once again they were talking about discharge! Apparently Max had different plans, that did not include going home. The very next day he had one of his typical breath holding spells that resulted in him passing out! Mommy and the Nurse, Emily, nearly had a heart attack! It was horrible to see your baby turn blue and go limp in your arms. Cardiology got involved again, the wonderful nurse practitioner Linda, made phone calls from home all weekend. The Cardiologist, Dr. Drake, did an echo and saw that the VSD was allowing more blood to his lungs than initially thought, and the muscle in the left side of his ventricle was larger than they thought, causing a blockage to his mitral valve.
They did a heart cath to take measurements and pressures to see how his heart was functioning. From this, they determined that his heart was pumping 4-9 times more blood than it should be, due to all of the extra blood flowing to his lungs. The decided to go ahead and fix his heart. He was intubated for the heart cath, and failed miserable during that extubation. Since the previous intubation took 10 tries, and I found that ridiculous I had vowed to NEVER leave him for an intubation process. So when they had to re-intubate him, I was standing right there. This time it only took 3 tries, but he coded and they had to perform chest compressions and give him epinephrine to get his heart rate up. I think this took about 5 years off of my lifespan. But it was decided that rather than putting him through the stress of extubation and intubation again, he would just stay intubated until his surgery
His heart surgery was scheduled on 6/2/11 at noon. Doug and I arrived at the hospital around 7am to get to spend extra time with him and try to hold him. Holding him during intubation
But, thankfully God watched over our boy, his surgery was successful, and by 5 that evening we were back with him. We had wonderful support from our family, Doug's parent's and brothers were here. One set of my parents were here, and Gunner and Makayla were with us as well. He did fantastic after his surgery. Had a few spells of arrhythmia on day 3 post-op, but that was managed with meds and hasn't returned yet. They performed an echo and said his heart function looked great. There is still one small VSD, but it is so small it couldn't have been fixed in surgery and they don't anticipate that it would cause him any issues. They only did a partial close on the ASD, to allow it to act as a "pop off valve" with high pressures, and it looks fine as well.
So now we are on to our next hurtle....the extubation. ENT is going to take him back into the OR and do another bronch to immediately address any swelling or obstruction. Hopefully this will be successful and we will be on our way home soon.
Back story: Max was born 3/22/11. On 3/24/11 he was sent to Children's Mercy Hospital in Kansas City, MO. There it was discovered that he had two holes in his heart a VSD (ventricular septum deviation) and an ASD (atrial septum deviation). At the time, neither seemed to be immediately life threatening, and they planned to due surgery to close the holes between 6 months-12 months of age.
He did have trouble breathing due to fluid on his lungs caused by the VSD. The VSD allowed extra oxygenated blood from his left ventricle to flow to his right ventricle and then into the lungs mixing with the de-oxygenated blood. They managed this with Lasix, a diuretic drug, and then two other meds, Dijoxin and Captopril to make his heart function more efficiently. He also had "spells" in which he would hold his breath and turn blue, his O2 saturation would drop along with his heart rate. These were usually due to agitation, and the nurses learned to just leave him alone and he would usually come back out of it. Max became famous around the NICU for these little spells!
The big issue keeping us in the NICU was feeding. He simply didn't have the energy needed to take a full bottle. We eventually had a g-tube put in place to allow safe feedings at home. A G-tube is a feeding tube that goes directly to his stomach. The operation went fine and the G-tube was safely in place, however he failed extubation afterwards. They had to re-intubate him and tried a round of steroids, again failing extubation. Eventually the Ear, Nose, and Throat doctors got involved and found granulation tissue, presumably caused by the initial intubation. They removed this and started him on more steroids, along with some pain meeds which he became addicted too. They actually had to give him methadone, the drug used for heroine and Meth addicts to deal with his withdrawals, my little junkie! This worked for a while, and he was able to get the breathing tube out, but only for two weeks or so. Right about the time they were discussing discharge with us, he had to be intubated again, due to obstructed airways. This intubation was rather traumatic in that it took 10 tries (yes 10!) to get him intubated. ENT went back in, found a raw area in his airway and thought that a scab had been knocked loose during the intubation process. After this he was again put on a longer regimen of steroids and was successfully extubated! Phew!
During the Bronch they also noted that his trachea curved. An Angiogram showed that his Aorta was pushing on the trachea, but it didn't cause any compression of the trachea to block the airway. They decided that at the time of surgery, if it was causing and issue they would move the aorta out of the way. The steroid regime caused problems of it's own. The muscles of his left ventricle became enlarged due to the steroids, so all the steroids were weaned off. They also stopped his Dijoxin and Captopril at this time.
Max did well after this, he started gaining weight, was being weaned off his O2, and his pain meeds, and once again they were talking about discharge! Apparently Max had different plans, that did not include going home. The very next day he had one of his typical breath holding spells that resulted in him passing out! Mommy and the Nurse, Emily, nearly had a heart attack! It was horrible to see your baby turn blue and go limp in your arms. Cardiology got involved again, the wonderful nurse practitioner Linda, made phone calls from home all weekend. The Cardiologist, Dr. Drake, did an echo and saw that the VSD was allowing more blood to his lungs than initially thought, and the muscle in the left side of his ventricle was larger than they thought, causing a blockage to his mitral valve.
They did a heart cath to take measurements and pressures to see how his heart was functioning. From this, they determined that his heart was pumping 4-9 times more blood than it should be, due to all of the extra blood flowing to his lungs. The decided to go ahead and fix his heart. He was intubated for the heart cath, and failed miserable during that extubation. Since the previous intubation took 10 tries, and I found that ridiculous I had vowed to NEVER leave him for an intubation process. So when they had to re-intubate him, I was standing right there. This time it only took 3 tries, but he coded and they had to perform chest compressions and give him epinephrine to get his heart rate up. I think this took about 5 years off of my lifespan. But it was decided that rather than putting him through the stress of extubation and intubation again, he would just stay intubated until his surgery
His heart surgery was scheduled on 6/2/11 at noon. Doug and I arrived at the hospital around 7am to get to spend extra time with him and try to hold him. Holding him during intubation
But, thankfully God watched over our boy, his surgery was successful, and by 5 that evening we were back with him. We had wonderful support from our family, Doug's parent's and brothers were here. One set of my parents were here, and Gunner and Makayla were with us as well. He did fantastic after his surgery. Had a few spells of arrhythmia on day 3 post-op, but that was managed with meds and hasn't returned yet. They performed an echo and said his heart function looked great. There is still one small VSD, but it is so small it couldn't have been fixed in surgery and they don't anticipate that it would cause him any issues. They only did a partial close on the ASD, to allow it to act as a "pop off valve" with high pressures, and it looks fine as well.
So now we are on to our next hurtle....the extubation. ENT is going to take him back into the OR and do another bronch to immediately address any swelling or obstruction. Hopefully this will be successful and we will be on our way home soon.
Subscribe to:
Posts (Atom)