Well, Kinley's first night off of ECMO went as well as we could have hoped for. Nurse Kathy did a great job taking care of Kinley. It was pretty quiet for the most part, so I was able to get some sleep. We were lucky enough to be able to stay in our PCU room overnight so I didn't have to leave the hospital, or even the NICU, to get some rest. Kevin on the other hand did not sleep. He stayed with Kinley, at her bedside, until 6:30 am and only after I came back from my full 4 hours of sleep did Kevin step out to get some much needed rest of his own. He is such a wonderful dad and I am sure Kinley already knows how lucky she is to have a dad like Kevin.
Overnight Kinley was weaned on the amount of oxygen that she received from the vent. At one point during the night she was down to 60%, but her oxygen saturation got too low (92%, not bad, but not over 95% like the doctors want). When I came back to Kinley's room in the morning she was receiving 78% oxygen from the vent and was doing good keeping her oxygen saturation up. Kinley was also doing a good job of keeping her CO2 down and when her 9:00 am labs were drawn her CO2 was at 52 (we want this to be in the 50's or low 60's).
A little after 9:00 am Dr. M came by to round on Kinley. Overall she was pleased with how Kinley is doing. She decided that Kinley's bleeding is much, much better, so she is going to stop the med that was paralyzing Kinley and let her move a little again. Also, we are going to start to wean Kinley's BP meds slowly since her BP is starting to normalize again. (I guess she has never really had "normal" BP, she has been at one extreme or the other.) The plan for today and into early next week is to monitor Kinley's oxygen saturation and continue to wean down the percentage of oxygen from the vent. We are also going to monitor CO2 and try to control that with vent settings. Kinley still has her belly button IV tubes that the nurses are using to give meds and blood products. Normally these are taken out around 9 days of life since that is typically when the belly button scab falls off. Obviously Kinley is a little over 9 days old by now, but since she was on ECMO everyone was hesitant to change out those tubes and put new ones in. Now that she is off of ECMO, and the heparin, she really needs new tubes placed in a different part of her body. We are going to wait until Monday when someone can come to insert new tubes and then pull out the belly button tubes once and for all. One bit of information that I really got excited about was that Dr. M said once Kinley's belly button tubes are out and she is off BP meds she can start feeding!! (For those of you that don't know, Kinley has plenty of milk at home that I have been collecting for her.) She will not be able to eat normally at first. She will need to have a feeding tube to deliver breast milk directly into her stomach, but at least she will finally get to use her stomach and bowels. Up until this point she has been getting her nutrition via IV.
At around 3:30 pm we got the results from the most recent blood gas test. Kinley's O2 is really good, but her CO2 is rising and was at 72, which is too high. Dr. M and Kinley's new neonatal nurse practitioner (NNP) Patti ordered an x-ray to see what was going on with Kinley's lungs. The upper portion of both lungs were a little collapsed, so they decided to change some of Kinley's vent settings some more to try and open those parts of the lungs.
Later on around 5:30 pm we get the next set of blood gas test results. Kinley's O2 remains good and her CO2 is down back to 62. Yeah Kinley! I guess the new vent settings are working. With Kinley looking pretty good, Kevin and I left around 6:30 pm to get a bite to eat.
After shift change we return to see Kinley, and nurse Kathy is back taking care of her. Kinley has maintained good O2 and CO2 while we were at dinner, but just because it is Kinley and things can't go too smoothly, now her BP is back on the rise. Kinley was on dopamine to raise her blood pressure, but that has been stopped and her blood pressure is still on the high end. Nurse Kathy changed Kinley's diaper, suctioned her breathing tube and gave her an extra round of pain and sedation meds to see if any of that would help to lower her BP. Dr. H was thinking that we may even need to start Kinley back on hydralazine to lower her blood pressure. Kinley sure likes to keep everyone on their toes.
Saturday, June 21, 2008
Friday, June 20, 2008
Friday, June 20th - First night off ECMO
A little before shift change we were able to go in and see Kinley again. It had been 21 days since we had seen Kinley without ECMO tubes going into her neck and she looks so much better now without those in!! Her body was pretty swollen after everything she had been through, but she looked beautiful to us. Also, Kinley has her high frequency ventilator back because she was having some difficulties getting rid of CO2 on the conventional vent.
After shift change we came back to Kinley's baby station and found nurse Kathy (really a nurse named Kathy, not Kinley's mommy) taking care of Kinley. Technically, since Kinley is not on ECMO anymore she only requires one nurse, but Carrie has been in and out helping Kathy. Kinley's oxygen saturation has been really good, but that is mainly because she is receiving 100% oxygen from her ventilator. Her blood pressure also looks good, but she is now requiring 2 medications, epinephrine and dopamine, to help raise her BP.
During Kinley's first assessment of the night shift we all noticed that her abdominal drain was not holding its suction. This is a problem because it means that it will no longer suction any excess blood from her abdomen. Carrie called in Dr. O for a consultation on how to handle and Dr. O ended up calling surgery to see if someone could come up and check why it is not holding its suction. Dr. Y, from surgery, came to Kinley's bedside and with the help of Kathy took off all of Kinley's dressings. (Kevin snuck in a few pics of Kinley's "battle scars." Viewer Beware: they are posted below.) Dr. Y was able to do some tricky work and now Kinley's abdominal holds its suction again.
It is close to 10:00 pm now and Kinley has been keeping her O2 sats around 100%, so Kathy the nurse was able to turn down the percentage of oxygen coming from her ventilator. Kinley is now receiving 80% oxygen from her vent and is keeping her O2 saturation above 95%. Way to go Kinley! Our goal is to keep her O2 sats above 95%. Kinley has also been able to keep her CO2 down with the help of the high frequency vent.
Kevin and I plan to stay close to Kinley this evening and are hoping for a quiet night.
After shift change we came back to Kinley's baby station and found nurse Kathy (really a nurse named Kathy, not Kinley's mommy) taking care of Kinley. Technically, since Kinley is not on ECMO anymore she only requires one nurse, but Carrie has been in and out helping Kathy. Kinley's oxygen saturation has been really good, but that is mainly because she is receiving 100% oxygen from her ventilator. Her blood pressure also looks good, but she is now requiring 2 medications, epinephrine and dopamine, to help raise her BP.
During Kinley's first assessment of the night shift we all noticed that her abdominal drain was not holding its suction. This is a problem because it means that it will no longer suction any excess blood from her abdomen. Carrie called in Dr. O for a consultation on how to handle and Dr. O ended up calling surgery to see if someone could come up and check why it is not holding its suction. Dr. Y, from surgery, came to Kinley's bedside and with the help of Kathy took off all of Kinley's dressings. (Kevin snuck in a few pics of Kinley's "battle scars." Viewer Beware: they are posted below.) Dr. Y was able to do some tricky work and now Kinley's abdominal holds its suction again.
It is close to 10:00 pm now and Kinley has been keeping her O2 sats around 100%, so Kathy the nurse was able to turn down the percentage of oxygen coming from her ventilator. Kinley is now receiving 80% oxygen from her vent and is keeping her O2 saturation above 95%. Way to go Kinley! Our goal is to keep her O2 sats above 95%. Kinley has also been able to keep her CO2 down with the help of the high frequency vent.
Kevin and I plan to stay close to Kinley this evening and are hoping for a quiet night.
Friday, June 20th - Updates While We Wait
All of these updates occurred in our PCU room:
Dr. M stopped by our PCU room to give us an update on Kinley's ECMO status. Kinley is officially off of ECMO. They have cut the tubes connecting Kinley to her ECMO machine. The tubes in Kinley's neck are still there, we will need the surgeons to remove those. As of Dr. M's update Kinley is still on the conventional ventilator. She is oxygenating well, but Dr. M wants to make sure that she is getting rid of her CO2. So she is going to run a blood gas test before making the decision of whether or not to move to the high frequency ventilator.
A little while later Pablo (surgeon) came by to get a consent form signed. This consent form was to allow the surgeons to place a catheter in the vein that Kinley's ECMO tube is coming out of. This catheter will be Kinley's central line for the nurses to input blood, drugs and/or anything else she might need.
After the surgeons were finished, it was time for Dr. S (a surgeon) to visit us. He came in and told us that the ECMO tubes have been removed from Kinley's neck, but he was not able to place the catheter. He was not surprised by this because Kinley has been on ECMO for 21 days and the vein in her neck is pretty beat up. Since the catheter could not be placed the vein was simply tied off to stop it from bleeding. For now, Kinley still has the tubes going into her belly button which they are using to give meds, blood, etc. These tubes will need to be removed soon because they are typically taken out after 1 week of life, but they could not do this for Kinley since she was on ECMO at that time. Now that Kinley is off of ECMO they will try to place other vein and artery lines tomorrow.
Dr. M returned one more time to let us know that Kinley is still on the conventional ventilator, but she is now requiring 100% oxygen (she started the day at 40%). An x-ray shows that the upper lobe on Kinley's left lung has collapsed and they are doing an open lung tool to try and get it back open. The high frequency ventilator is still on stand-by in case Kinley needs it, but her blood gases are still looking okay. Dr. M is pretty confident that Kinley's lungs can handle all of her gas exchange, but we need to make sure that they stay open. Kinley is now receiving a new medication to help with clotting and they have a second new medication for clotting on stand-by. The biggest issue continues to be Kinley's bleeding. They are still infusing a lot of blood products. Once that is under control we will all be able to sleep better (or at all). Finally, Dr. M lets us know that we are in for a pretty rough, and long night.
We are very disappointed to find out that tomorrow is Dr. M's last day with Kinley. How much do doctors make a day? I wonder if any bank will loan us enough money to keep Dr. M as Kinley's doctor.
Dr. M stopped by our PCU room to give us an update on Kinley's ECMO status. Kinley is officially off of ECMO. They have cut the tubes connecting Kinley to her ECMO machine. The tubes in Kinley's neck are still there, we will need the surgeons to remove those. As of Dr. M's update Kinley is still on the conventional ventilator. She is oxygenating well, but Dr. M wants to make sure that she is getting rid of her CO2. So she is going to run a blood gas test before making the decision of whether or not to move to the high frequency ventilator.
A little while later Pablo (surgeon) came by to get a consent form signed. This consent form was to allow the surgeons to place a catheter in the vein that Kinley's ECMO tube is coming out of. This catheter will be Kinley's central line for the nurses to input blood, drugs and/or anything else she might need.
After the surgeons were finished, it was time for Dr. S (a surgeon) to visit us. He came in and told us that the ECMO tubes have been removed from Kinley's neck, but he was not able to place the catheter. He was not surprised by this because Kinley has been on ECMO for 21 days and the vein in her neck is pretty beat up. Since the catheter could not be placed the vein was simply tied off to stop it from bleeding. For now, Kinley still has the tubes going into her belly button which they are using to give meds, blood, etc. These tubes will need to be removed soon because they are typically taken out after 1 week of life, but they could not do this for Kinley since she was on ECMO at that time. Now that Kinley is off of ECMO they will try to place other vein and artery lines tomorrow.
Dr. M returned one more time to let us know that Kinley is still on the conventional ventilator, but she is now requiring 100% oxygen (she started the day at 40%). An x-ray shows that the upper lobe on Kinley's left lung has collapsed and they are doing an open lung tool to try and get it back open. The high frequency ventilator is still on stand-by in case Kinley needs it, but her blood gases are still looking okay. Dr. M is pretty confident that Kinley's lungs can handle all of her gas exchange, but we need to make sure that they stay open. Kinley is now receiving a new medication to help with clotting and they have a second new medication for clotting on stand-by. The biggest issue continues to be Kinley's bleeding. They are still infusing a lot of blood products. Once that is under control we will all be able to sleep better (or at all). Finally, Dr. M lets us know that we are in for a pretty rough, and long night.
We are very disappointed to find out that tomorrow is Dr. M's last day with Kinley. How much do doctors make a day? I wonder if any bank will loan us enough money to keep Dr. M as Kinley's doctor.
Friday, June 20th - Bleeding Issues
Kathy and I ended up staying pretty late last night to watch over our beautiful baby. This caused us to get a little later start than normal.
As we were walking into Children's Mercy my cell phone rang, it was Dr. H. (FYI - Anytime my caller ID shows "Children's Mercy Hospital" my heart stops.) Dr. H informs me that Kinley's BP number and urine output did not improve overnight and now they are having a hard time feeling Kinley's pulse in her legs. The doctors have already met and they feel these problems are probably being caused by blood leaking and pooling in Kinley's abdomen. Extra blood in the abdomen puts pressure on the veins returning from the legs and stops that blood from returning to the heart. This would cause the pulse in her legs to be weak and would also explain why she is not producing urine. The kidneys cannot produce urine if they are not receiving much blood. As I am speaking with Dr. H, Pablo (a surgeon) is in with Kinley and he is putting in an abdomen drain.
When Kathy and I arrive at the NICU we are shown to the same PCU room we were in yesterday to wait. We cannot see Kinley yet since they are still working on her and they need to keep the room sterile. We end up waiting for close to 50 minutes before we hear anything. It felt like an eternity and our worries grew more with each passing minute. Dr. H was the first to come by our PCU room. She lets us know that everything went well and Kinley is looking much better. The new abdominal drain had already removed 300 mL (10 ounces) of blood. (If you are not sure how much that is you may want to measure it out when you get home.) Kinley's abdomen is already smaller and the color and pulse is returning to her legs. On a different note, this new found bleeding means that we need to move faster on getting Kinley off of ECMO. The new plan will be to test Kinley this afternoon and see if she can support herself by doing all of her own gas exchange. Before we can see Kinley the nurses will need to get her cleaned up.
Our next visitor is Dr. M. She reiterates a lot to the information Dr. H told us and gives us a few more details on why Kinley needs to come off of ECMO. The main reason is still the amount of bleeding, but Dr. M feels that Kinley's heart needs more support right now than her lungs. Kinley's set up on ECMO only helps her lungs and Dr. M can support Kinley's heart better if she is off of ECMO. They will let Kinley rest for about an hour and then around noon they will start to lower the support of the ECMO machine. If Kinley can tolerate supporting herself they will clamp and cut her ECMO tubes. This will allow the heparin levels in her body to drop and her blood will begin to clot.
We return to Kinley's bedside and see that she looks very similar to when we left her. The few changes are the new abdominal drain and her skin is pretty pale, but we have been assured that her pinkness will return as they work to replace the blood she is losing. This is kind of sad to say, but it means so much. Kinley is peeing again. She has catheter since she is paralyzed (by drugs) and we finally have urine output. There is almost constant motion in the operating room/Kinley's room as Dr. M, Dr. H and multiple nurses work to stay on top of Kinley's blood loss and also get her prepared to come off of ECMO. Around noon they begin to lower Kinley's ECMO support.
Kinley has handled the lower support pretty well and they decide to cap off the oxygen that is being put into the ECMO machine. Kinley's oxygen saturation levels are still good, but her CO2 levels are going up a bit. It looks like Kinley will need to be moved to the high frequency ventilator because it helps more at removing excess CO2. They have discovered that Kinley is leaking blood around her abdominal drain and this is causing her BP to drop. Now that Kinley is losing more blood than thought before, she has to come off of ECMO soon. A perfusionist will be here at 2:30 pm to cut her ECMO tubes and the surgeons will be here at 3:00 pm to remove the tubes from her neck.
We will try to post an update later today when things have settled down.
As we were walking into Children's Mercy my cell phone rang, it was Dr. H. (FYI - Anytime my caller ID shows "Children's Mercy Hospital" my heart stops.) Dr. H informs me that Kinley's BP number and urine output did not improve overnight and now they are having a hard time feeling Kinley's pulse in her legs. The doctors have already met and they feel these problems are probably being caused by blood leaking and pooling in Kinley's abdomen. Extra blood in the abdomen puts pressure on the veins returning from the legs and stops that blood from returning to the heart. This would cause the pulse in her legs to be weak and would also explain why she is not producing urine. The kidneys cannot produce urine if they are not receiving much blood. As I am speaking with Dr. H, Pablo (a surgeon) is in with Kinley and he is putting in an abdomen drain.
When Kathy and I arrive at the NICU we are shown to the same PCU room we were in yesterday to wait. We cannot see Kinley yet since they are still working on her and they need to keep the room sterile. We end up waiting for close to 50 minutes before we hear anything. It felt like an eternity and our worries grew more with each passing minute. Dr. H was the first to come by our PCU room. She lets us know that everything went well and Kinley is looking much better. The new abdominal drain had already removed 300 mL (10 ounces) of blood. (If you are not sure how much that is you may want to measure it out when you get home.) Kinley's abdomen is already smaller and the color and pulse is returning to her legs. On a different note, this new found bleeding means that we need to move faster on getting Kinley off of ECMO. The new plan will be to test Kinley this afternoon and see if she can support herself by doing all of her own gas exchange. Before we can see Kinley the nurses will need to get her cleaned up.
Our next visitor is Dr. M. She reiterates a lot to the information Dr. H told us and gives us a few more details on why Kinley needs to come off of ECMO. The main reason is still the amount of bleeding, but Dr. M feels that Kinley's heart needs more support right now than her lungs. Kinley's set up on ECMO only helps her lungs and Dr. M can support Kinley's heart better if she is off of ECMO. They will let Kinley rest for about an hour and then around noon they will start to lower the support of the ECMO machine. If Kinley can tolerate supporting herself they will clamp and cut her ECMO tubes. This will allow the heparin levels in her body to drop and her blood will begin to clot.
We return to Kinley's bedside and see that she looks very similar to when we left her. The few changes are the new abdominal drain and her skin is pretty pale, but we have been assured that her pinkness will return as they work to replace the blood she is losing. This is kind of sad to say, but it means so much. Kinley is peeing again. She has catheter since she is paralyzed (by drugs) and we finally have urine output. There is almost constant motion in the operating room/Kinley's room as Dr. M, Dr. H and multiple nurses work to stay on top of Kinley's blood loss and also get her prepared to come off of ECMO. Around noon they begin to lower Kinley's ECMO support.
Kinley has handled the lower support pretty well and they decide to cap off the oxygen that is being put into the ECMO machine. Kinley's oxygen saturation levels are still good, but her CO2 levels are going up a bit. It looks like Kinley will need to be moved to the high frequency ventilator because it helps more at removing excess CO2. They have discovered that Kinley is leaking blood around her abdominal drain and this is causing her BP to drop. Now that Kinley is losing more blood than thought before, she has to come off of ECMO soon. A perfusionist will be here at 2:30 pm to cut her ECMO tubes and the surgeons will be here at 3:00 pm to remove the tubes from her neck.
We will try to post an update later today when things have settled down.
Thursday, June 19, 2008
Thursday, June 19th - Post Op Update
Before we were able to see Kinley, Dr. W took us to see her post op chest x-ray. The difference is amazing. The biggest difference, Kinley actually has two lungs! And both of them have air in them. The upper lobe of her right lung is still compressed/collapsed, but Dr. W feels that it looks better than her previous x-ray. Also, her heart has already begun to move towards the left side of her chest. It is currently sitting right in the middle of her chest cavity.
Now for the moment Kathy and I have been waiting for since 10:00 am. We walk back into the operating room and see immediately that Kinley has already been moved back into her old bed. As we get closer we can see that the majority of her belly is covered in bandages. Her belly looks huge now that all of her organs are in their correct place. The bandages, on her belly, are covering three different incisions: the largest (a bit over 4 inches) was the one made to perform the diaphragm repair surgery, the second (the width of a finger) was made so Dr. S could push the spleen out of the way and the third (the width of a pencil) was made to put in a chest tube which will drain any excess blood from Kinley's chest cavity. Her chest, on the left side, looks like it is collapsed. (Don't worry, it isn't collapsed.) The reason it looks that way is simply because the bowels that were occupying the space in her left chest are now in her abdomen where they belong. The final difference we can see is the chest tube, coming out of her bandages, allowing blood to drain out of her chest cavity. Other than those three items, she looks like the same Kinley we left 10:00 am.
Walking into the operating room after surgery. Kinley is back in her old bed.
Our first view of post op Kinley.
A closer view of her bandages.
The red ball at the bottom is collecting the blood from her chest tube.
Kinley's vitals are looking good considering she just went through major surgery while on heparin. Her BP is at a normal level without the help of hydralazine (BP med to lower BP) and her oxygen saturation is right around 100%. Her heart rate is a bit elevated, but just a bit over normal.
After getting our fill of making sure that our baby was doing well we headed back to our PCU room, where our families were awaiting our return and our update. Once Kathy and I were back we all took turns visiting Kinley to make sure everyone got their chance to see her.
As the afternoon progresses into the evening, Kathy, myself, Jackie, Sarah and Dr. M all begin to notice that Kinley's BP is steadily going down. On top of that, Kinley is not producing very much urine. Dr. M, Jackie and Sarah do not find the urine issue to be too concerning since Kinley just went through surgery and is currently paralyzed (on purpose, by drugs) to limit her movement. The lower BP issue needs to be addressed though and everyone agrees that the main cause is Kinley's loss of blood due to the heparin and her inability to clot. Kinley is not losing excessive amounts of blood, but her chest tube is draining pretty consistently. To offset this loss of fluids and to help bring Kinley's BP back up, Dr. M orders replacement fluids. Replacement fluids can be saline (volume filler), albumin (volume filler), packed red blood cells (to increase oxygen carrying cells), platelets (to help with clotting), fresh frozen plasma (to help with clotting) and/or cryo-precipitate (to help with clotting) depending on what needs Kinley has.
After shift change we find Gayla and Melissa watching over our recently surgerized daughter. (Yes, I just made that word up. Surgerized: to have gone through surgery.) Dr. P is here tonight and the decision is made to continue the replacement fluids to help with Kinley's BP. Dr. P informs us that tomorrow, when they stop the drugs that are paralyzing Kinley, we will be able to get a better idea of what her status and vitals are. The paralytic drug that Kinley is on right now is known for lowing BP and her lack of movement could be directly connected to the lack of urine output. Also, the stress and physical changes to Kinley, from the surgery, will need time to work themselves out before we really know what her condition is.
The care from everyone, nurses and doctors, here has been so amazing and extremely supportive. Dot and Megan were working today and both made sure to stop by and see how Kinley, Kathy and I were doing. Phyllis and Aja both came in on their days off to check on Kinley and make sure that her surgery went well and Julie called in from home to check up on everything. Another thing that happened today that gave us even more comfort in Kinley's care is that Dr. M refused to leave Kinley's side until her BP began to rise.
One item that I would like to correct is that I have not properly recognized Kinley's night nurses in this blog. Please know that Kinley, Kathy and I love all of our nurses, both night and day. Unfortunately for Kathy and I we cannot spend as much time with our night nurses due to lack of sleep and extreme exhaustion, but know that they are the only reason Kathy and I can get any sleep. Overall this lack of time together is probably more of a benefit for the night nurses because they don't have to answer my constant questions and listen to my horrible jokes. (You should see some of the eye rolls I get from Kathy. Lucky for me, Kinley is too young to roll her eyes, but I know that day will be here too soon.)
Now for the moment Kathy and I have been waiting for since 10:00 am. We walk back into the operating room and see immediately that Kinley has already been moved back into her old bed. As we get closer we can see that the majority of her belly is covered in bandages. Her belly looks huge now that all of her organs are in their correct place. The bandages, on her belly, are covering three different incisions: the largest (a bit over 4 inches) was the one made to perform the diaphragm repair surgery, the second (the width of a finger) was made so Dr. S could push the spleen out of the way and the third (the width of a pencil) was made to put in a chest tube which will drain any excess blood from Kinley's chest cavity. Her chest, on the left side, looks like it is collapsed. (Don't worry, it isn't collapsed.) The reason it looks that way is simply because the bowels that were occupying the space in her left chest are now in her abdomen where they belong. The final difference we can see is the chest tube, coming out of her bandages, allowing blood to drain out of her chest cavity. Other than those three items, she looks like the same Kinley we left 10:00 am.
Walking into the operating room after surgery. Kinley is back in her old bed.
Our first view of post op Kinley.
A closer view of her bandages.
The red ball at the bottom is collecting the blood from her chest tube.
Kinley's vitals are looking good considering she just went through major surgery while on heparin. Her BP is at a normal level without the help of hydralazine (BP med to lower BP) and her oxygen saturation is right around 100%. Her heart rate is a bit elevated, but just a bit over normal.
After getting our fill of making sure that our baby was doing well we headed back to our PCU room, where our families were awaiting our return and our update. Once Kathy and I were back we all took turns visiting Kinley to make sure everyone got their chance to see her.
As the afternoon progresses into the evening, Kathy, myself, Jackie, Sarah and Dr. M all begin to notice that Kinley's BP is steadily going down. On top of that, Kinley is not producing very much urine. Dr. M, Jackie and Sarah do not find the urine issue to be too concerning since Kinley just went through surgery and is currently paralyzed (on purpose, by drugs) to limit her movement. The lower BP issue needs to be addressed though and everyone agrees that the main cause is Kinley's loss of blood due to the heparin and her inability to clot. Kinley is not losing excessive amounts of blood, but her chest tube is draining pretty consistently. To offset this loss of fluids and to help bring Kinley's BP back up, Dr. M orders replacement fluids. Replacement fluids can be saline (volume filler), albumin (volume filler), packed red blood cells (to increase oxygen carrying cells), platelets (to help with clotting), fresh frozen plasma (to help with clotting) and/or cryo-precipitate (to help with clotting) depending on what needs Kinley has.
After shift change we find Gayla and Melissa watching over our recently surgerized daughter. (Yes, I just made that word up. Surgerized: to have gone through surgery.) Dr. P is here tonight and the decision is made to continue the replacement fluids to help with Kinley's BP. Dr. P informs us that tomorrow, when they stop the drugs that are paralyzing Kinley, we will be able to get a better idea of what her status and vitals are. The paralytic drug that Kinley is on right now is known for lowing BP and her lack of movement could be directly connected to the lack of urine output. Also, the stress and physical changes to Kinley, from the surgery, will need time to work themselves out before we really know what her condition is.
The care from everyone, nurses and doctors, here has been so amazing and extremely supportive. Dot and Megan were working today and both made sure to stop by and see how Kinley, Kathy and I were doing. Phyllis and Aja both came in on their days off to check on Kinley and make sure that her surgery went well and Julie called in from home to check up on everything. Another thing that happened today that gave us even more comfort in Kinley's care is that Dr. M refused to leave Kinley's side until her BP began to rise.
One item that I would like to correct is that I have not properly recognized Kinley's night nurses in this blog. Please know that Kinley, Kathy and I love all of our nurses, both night and day. Unfortunately for Kathy and I we cannot spend as much time with our night nurses due to lack of sleep and extreme exhaustion, but know that they are the only reason Kathy and I can get any sleep. Overall this lack of time together is probably more of a benefit for the night nurses because they don't have to answer my constant questions and listen to my horrible jokes. (You should see some of the eye rolls I get from Kathy. Lucky for me, Kinley is too young to roll her eyes, but I know that day will be here too soon.)
Thursday, June 19th - Surgery is Done!!!
It is 11:30 am. Kathy and I are waiting in our PCU room, with our families, when there is a knock at the door.
It is Dr. S and Dr. M. The surgery is done and it went as well as can be expected. Luckily, Kinley's diaphragmatic hernia was small enough that Dr. S did not have to use a patch. This means that Dr. S was able to close the hole by suturing tissue to tissue. Dr. S had to make a separate incision, other than the main incision for the repair surgery, in order to push Kinley's spleen out the way. He informs us that Kinley has a good amount of left lung which we are overjoyed to hear, but size does not always correlate to function. We will have to wait and see how her left lung functions. A chest tube was put in to help drain any excess blood that may be pooling in her chest cavity. Since Kinley's body has always grown with some of her bowels in her chest, her abdomen was not quite large enough to contain everything once the bowels were moved down. To get around this situation Dr. S left the inner most layer of muscle open and closed the remainder of Kinley's incision above it. This means that Kinley will have a hernia in her abdomen wall and this will allow room for everything to fit. This abdominal hernia will need to be fixed later, but not for a few months or even a year. Dr. M informs us that Kinley's BP and oxygen saturation were great through the entire operation. She also lets us know that they plan to keep Kinley completely paralyzed for the next 24 hours. This is mainly to minimize her bleeding while she is still on ECMO and receiving heparin.
The nurses are getting Kinley presentable and we will soon be able to see our baby girl again.
It is Dr. S and Dr. M. The surgery is done and it went as well as can be expected. Luckily, Kinley's diaphragmatic hernia was small enough that Dr. S did not have to use a patch. This means that Dr. S was able to close the hole by suturing tissue to tissue. Dr. S had to make a separate incision, other than the main incision for the repair surgery, in order to push Kinley's spleen out the way. He informs us that Kinley has a good amount of left lung which we are overjoyed to hear, but size does not always correlate to function. We will have to wait and see how her left lung functions. A chest tube was put in to help drain any excess blood that may be pooling in her chest cavity. Since Kinley's body has always grown with some of her bowels in her chest, her abdomen was not quite large enough to contain everything once the bowels were moved down. To get around this situation Dr. S left the inner most layer of muscle open and closed the remainder of Kinley's incision above it. This means that Kinley will have a hernia in her abdomen wall and this will allow room for everything to fit. This abdominal hernia will need to be fixed later, but not for a few months or even a year. Dr. M informs us that Kinley's BP and oxygen saturation were great through the entire operation. She also lets us know that they plan to keep Kinley completely paralyzed for the next 24 hours. This is mainly to minimize her bleeding while she is still on ECMO and receiving heparin.
The nurses are getting Kinley presentable and we will soon be able to see our baby girl again.
Thrusday, June 19th - Surgery Has Begun
Late last night we found out that surgery will be moved from 8 am to 10 am. This was a little disappointing, but at least we are still scheduled for the same day.
We arrived very early this morning to allow us to spend as much time with Kinley as possible before surgery. Gayla and Connie gave us an update on everything we missed. To allow the surgeons as much room as possible they must take away Kinley's heater, but don't worry because Kinley has a different type of heater now. For surgery, Kinley will be laying on a heated air mattress that will help to keep her body temp up. Kinely also received the open lung tool treatment again and her oxygen saturation is looking much better than yesterday. Her BP is much better also, but that is mainly due to an increase in hydralazine doses. Seeing Kinley's BP down and oxygen saturation up immediately raised our spirits.
After shift change Jackie and Sarah begin to get Kinley prepared for surgery. Setting up all of her pumps and drips and everything else they might need during surgery.
Dr. S and the surgery team arrive at 10:00 am. Dr. S speaks with us briefly about the procedure before we have to leave the room. We kiss Kinley goodbye, wish her good luck and head to the PCU room that the NICU has set aside for us to use during Kinley's surgery. Both Kathy's family and my family are here for support. Now all we have to do is wait.
Here are some pics to enjoy while we all wait.
Kinley got a new bow so she can look pretty for surgery
The Melcher Family
Resting up.
Another look at my pretty new bow
We arrived very early this morning to allow us to spend as much time with Kinley as possible before surgery. Gayla and Connie gave us an update on everything we missed. To allow the surgeons as much room as possible they must take away Kinley's heater, but don't worry because Kinley has a different type of heater now. For surgery, Kinley will be laying on a heated air mattress that will help to keep her body temp up. Kinely also received the open lung tool treatment again and her oxygen saturation is looking much better than yesterday. Her BP is much better also, but that is mainly due to an increase in hydralazine doses. Seeing Kinley's BP down and oxygen saturation up immediately raised our spirits.
After shift change Jackie and Sarah begin to get Kinley prepared for surgery. Setting up all of her pumps and drips and everything else they might need during surgery.
Dr. S and the surgery team arrive at 10:00 am. Dr. S speaks with us briefly about the procedure before we have to leave the room. We kiss Kinley goodbye, wish her good luck and head to the PCU room that the NICU has set aside for us to use during Kinley's surgery. Both Kathy's family and my family are here for support. Now all we have to do is wait.
Here are some pics to enjoy while we all wait.
Kinley got a new bow so she can look pretty for surgery
The Melcher Family
Resting up.
Another look at my pretty new bow
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