We got to go home today! Our stay for the Glenn surgery was shorter than we expected, at only 5 days. Our cardiologist had warned that we would be in for about 7 to 10 days but she blew that out of the water! She did great throughout her surgery and did not have a single complication. She did not require any oxygen and we were quickly able to restart our home feeding schedule.
The thing we had the most trouble with this time was pain. I think it was much harder now than when Addy was a newborn and didn't know the difference between pain and pain free. We experience issues getting the floor nurses to give her adequate pain medicine. After 3 days of her being on the same dose with no problems for some reason they are still afraid they are going to over medicate her and she is going to stop breathing. We experienced several bad pain episodes when they witheld her meds in which she then would start to scream uncontrollably and cry until meds could start working. She would turn a darker color of blue than I have ever seen out of our girl and that bothers me if it is not necessary.We have tried to space her Oxycodone to every 6 hours today but she is overly tired at this point and that seems to exacerbate it. She has slept since we got home at 2 o'clock today but I am hoping that after a solid 18 hours of sleep she will be almost back to herself tomorrow.
It seems that this stage has gone by in the blink of an eye. I am ready to get our girl all healed up so we can get back to our everyday routine and start being able to treat her like a "real" baby.
On another note, Heath and I have decided to start a foundation after our experience with Addy. The money and donations that are given will be used to support families that are going through the experience of having a child with congenital heart disease. For now, we will be local and mostly helping families in the Nashville area but we will help anyone that needs it if possible. We will accept donations of money, toys, blankets, and anything else that would be helpful to families during this time. Our help will be based on referrals from hospital personnel and by word of mouth and tailored exactly for what is most beneficial for each family. We feel like by our place in the hospital Our plan is to actually provide the support services ourself and not directly through the hospital. Although there is help available through the hospital for some families, as a working and middle class family, we found little support for what was still a very hard time emotionally and financially. Any donations will gladly be accepted as soon as we get our legal stuff taken care of.
Our Congenital Heart Warrior!
Rockin her Red!
Sunday, December 26, 2010
Friday, December 24, 2010
3 days post op
We are now 72 hours post op Glenn. Addy is doing really well and ahead of schedule for going home. She still has her chest tube but the output is minimal so it will most likely be pulled out tomorrow. After that, we will have to stay 24 hours more and we will be discharged as long as she has no complications! As with the Norwood, she has sailed through this surgery with flying colors! Her perfusion is great and her breathing is comfortable.
Our biggest challenges right now are pain management. It is definately harder now than when she was a newborn and did not know life without pain. Also, all of the people in the hospital that come in and touch her I think scare her so it is much more difficult to be able to leave her. As a newborn she slept all the time so she scarcely knew we were there but now I cannot bear to leave her even to run necessary errands if she is awake. Her being the very active child that she is probably makes her pain a little worse since she doesn't just lay still anymore. We are giving her round the clock Tylenol and Oxycodone to help with the pain and for the most part it is well controlled except for a few breakthrough episodes.
Our biggest challenges right now are pain management. It is definately harder now than when she was a newborn and did not know life without pain. Also, all of the people in the hospital that come in and touch her I think scare her so it is much more difficult to be able to leave her. As a newborn she slept all the time so she scarcely knew we were there but now I cannot bear to leave her even to run necessary errands if she is awake. Her being the very active child that she is probably makes her pain a little worse since she doesn't just lay still anymore. We are giving her round the clock Tylenol and Oxycodone to help with the pain and for the most part it is well controlled except for a few breakthrough episodes.
Wednesday, December 22, 2010
Post op Day 1 of Glenn
Well, Addy had her Glenn procedure yesterday. It went even faster by expected with only a 44 minute bypass time and no cross clamp (for all our nurse friends!). Dr Bischell was done by 10:30 in the morning and she was moved back to our home in the PCICU. There were absolutely no complications with the surgery. He said that she had no scarring and her bleeding was absolutely minimal. Although we originally hoped that she would extubate yesterday she hasn't quite made it off the ventilator yet. She has a left sided effusion (which isn't uncommon) today and got quite fluid overloaded throughout the night until they restarted her diuretics. Her vent rate and support is weaned to minimal settings except she is requiring 60% oxygen, probably because of the fluid. If we can get her diuresed today we are still optimistic that she will come of the ventilator this afternoon. She is on a precedex infusion for sedation to keep her comfortable and she gets Morphine for her pain when she needs it. Our Addy has always been a very "pink" heart baby but over the last few weeks the signs that she was ready for this surgery. She didn't want to eat as much and it was apparent that she was working hard to breathe. Her hands and feet were more dusky and sweaty than they used to be. Now it is amazing how pink she is again. Her hands and feet are warm and dry, no longer purple looking!
It is hard to believe that yesterday we actually had the Glenn. It seems like we just took her home last week but it really has been 4 months. All of her "aunts & uncles" in the ICU can't believe how big she has gotten since we were here last. Our cardiologist really put it into perspective yesterday when she told us that we left that second 20% mortality statistic at the door yesterday. We have now overcome the 40% mortality associated with this disease before her Glenn. Although we are not out of the woods yet things are expected to be much better after this surgery. Hopefully after we get her home she will be allowed to go to feeding on demand and we will be done with having a feeding tube in her nose all the time! We have seen our cardiologist at least once a week since we went home after the Norwood but our cardiologist told us yesterday that after her initial post operative visit we will only have to see her every 3 months! I couldn't believe it but it really put it into perspective that they are that much LESS worried about her after this procedure. We have had so much support through this journey from family and friends that we appreciate so much. Everyone has sent out prayers for her and our family that have really helped. Our friends in the unit have been wondeful and it has made dealing with the difficult part of being the patient instead of the nurse a lot easier. It is incredibly difficult to go from the nurse side of the bed to the patient/parent side. We are used to being the one working on the patients, not the ones that are sent out to the waiting room when something happens. Thankfully, we have come to an agreement this time that we will not be kicked out of the room for intubations and extubations, but I will still leave for sterile procedures if needed. There are times where our knowledge as nurses has been a mixed blessing but overall I really believe that God led Heath and I to be cardiac nurses for a reason, which we now know. Our Addy needed us to be able to fight for her so that she can grow up and be a poster child for how wonderful a child with half a heart can live! We thank everyone for your support and prayers and love you all!
It is hard to believe that yesterday we actually had the Glenn. It seems like we just took her home last week but it really has been 4 months. All of her "aunts & uncles" in the ICU can't believe how big she has gotten since we were here last. Our cardiologist really put it into perspective yesterday when she told us that we left that second 20% mortality statistic at the door yesterday. We have now overcome the 40% mortality associated with this disease before her Glenn. Although we are not out of the woods yet things are expected to be much better after this surgery. Hopefully after we get her home she will be allowed to go to feeding on demand and we will be done with having a feeding tube in her nose all the time! We have seen our cardiologist at least once a week since we went home after the Norwood but our cardiologist told us yesterday that after her initial post operative visit we will only have to see her every 3 months! I couldn't believe it but it really put it into perspective that they are that much LESS worried about her after this procedure. We have had so much support through this journey from family and friends that we appreciate so much. Everyone has sent out prayers for her and our family that have really helped. Our friends in the unit have been wondeful and it has made dealing with the difficult part of being the patient instead of the nurse a lot easier. It is incredibly difficult to go from the nurse side of the bed to the patient/parent side. We are used to being the one working on the patients, not the ones that are sent out to the waiting room when something happens. Thankfully, we have come to an agreement this time that we will not be kicked out of the room for intubations and extubations, but I will still leave for sterile procedures if needed. There are times where our knowledge as nurses has been a mixed blessing but overall I really believe that God led Heath and I to be cardiac nurses for a reason, which we now know. Our Addy needed us to be able to fight for her so that she can grow up and be a poster child for how wonderful a child with half a heart can live! We thank everyone for your support and prayers and love you all!
Thursday, December 16, 2010
5 days before the Glenn surgery
We were admitted to 6c tonight because Ms Addy has not been behaving herself lately. Over the last month she has progressively had to work a little harder to do her normal activities. She doesn't seem to want to eat as much as she used to but we mostly have attributed that to the fact that we are pumping so much into her every 3 hours around the clock. Overall though, her growth has been great and weighed in at a whopping 13 lbs 2 ounces this week. The subtle changes we have noticed are not unexpected as she grows closer to needing her Glenn surgery.
Monday when we saw Dr Kavanaugh she couldn't feel her pulses quite as well and she was working a little harder to breath so that bought us an extra echo, which looked great. Over the last two days though she has just not quite been herself. She is napping much more and does not want to eat anything by mouth at all. Her oxygen saturations are dipping less than 75% which we don't like too much. She is more dusky and her hands and feet are cool and clammy pretty often. From Monday to today we only gained 1 oz so that would not have made her gain enough even by next week. So of course, as Dr Kavanaugh says, "If she does not look perfect, she comes to stay with us"....so here we are.
Of course since we have been here Addy has done nothing but charm everyone with her adorable smile and good nature. We are here for the night so far but if tomorrow nothing has changed and we have no answers we may be here until her surgery. We really didn't want to stay all weekend but we will do whatever has to be done. At this point Heath and I are both ready to get this surgery over with so we can quit living on pins and needles associated with being between the Norwood and Glenn. Addy is telling us that she is as ready as we are. Although on one hand we hate that we will be in the hospital on Christmas, if all goes well it will be like a Christmas present to us to have her doing better! Hunter and Maci will be gone until Christmas morning and then we will do a "Santa" at home with them and at the hospital with her. We have so many good friends and family that care about her that we are very fortunate. Addy is very loved and I know in my heart that God has special plans for her and our family. I will keep everyone updated as we find out new information.
Monday when we saw Dr Kavanaugh she couldn't feel her pulses quite as well and she was working a little harder to breath so that bought us an extra echo, which looked great. Over the last two days though she has just not quite been herself. She is napping much more and does not want to eat anything by mouth at all. Her oxygen saturations are dipping less than 75% which we don't like too much. She is more dusky and her hands and feet are cool and clammy pretty often. From Monday to today we only gained 1 oz so that would not have made her gain enough even by next week. So of course, as Dr Kavanaugh says, "If she does not look perfect, she comes to stay with us"....so here we are.
Of course since we have been here Addy has done nothing but charm everyone with her adorable smile and good nature. We are here for the night so far but if tomorrow nothing has changed and we have no answers we may be here until her surgery. We really didn't want to stay all weekend but we will do whatever has to be done. At this point Heath and I are both ready to get this surgery over with so we can quit living on pins and needles associated with being between the Norwood and Glenn. Addy is telling us that she is as ready as we are. Although on one hand we hate that we will be in the hospital on Christmas, if all goes well it will be like a Christmas present to us to have her doing better! Hunter and Maci will be gone until Christmas morning and then we will do a "Santa" at home with them and at the hospital with her. We have so many good friends and family that care about her that we are very fortunate. Addy is very loved and I know in my heart that God has special plans for her and our family. I will keep everyone updated as we find out new information.
Wednesday, December 1, 2010
Fun Days
Our Glenn has been scheduled for December 21st, with pre-op on the 20th. Hunter and Maci will be gone until Christmas Day. We are ready to get this phase over with so we can get back to normal.
I restarted work this week with mixed emotions. On one hand I am so glad to get out of the house and once again have adult interaction. On the other hand Addy is to the stage where everyday she does something new! This week she has gone from just kicking and playing around in her pack andp lay to fully sitting up on her own in our laps and trying to roll over! She will no longer tolerate laying down or being held for more than a few minutes. We went today and bought her Christmas present but had to give it to her early since we won't get to use it while she is in the hospital. We got her a jumparoo bouncer and she absolutely loves it! She bounced and squealed in delight for a solid 45 minutes before getting tired of it! She is developing such a personality! Today was also our first time to try rice cereal. Dr Kavanaugh really doesn't want her to eat much food before her surgery but our girl needs to eat! She lapped it right off the spoon like she had been doing it for weeks. We are also pretty sure that Addy is teething since she constantly stuffs her entire hand into her mouth and is drooling worse than our bulldogs.
Although I hate to miss a single minute of these moments, Mommy must go back to work. We are trying to seal a contract on a bigger house for us at the moment. We are quite excited and it would be great to have a home where we are not tripping over one another. We won't move until the spring to give Addy time to recover but none the less it is still very exciting! Well, that is most of the new news for now, I will keep everyone updated!
I restarted work this week with mixed emotions. On one hand I am so glad to get out of the house and once again have adult interaction. On the other hand Addy is to the stage where everyday she does something new! This week she has gone from just kicking and playing around in her pack andp lay to fully sitting up on her own in our laps and trying to roll over! She will no longer tolerate laying down or being held for more than a few minutes. We went today and bought her Christmas present but had to give it to her early since we won't get to use it while she is in the hospital. We got her a jumparoo bouncer and she absolutely loves it! She bounced and squealed in delight for a solid 45 minutes before getting tired of it! She is developing such a personality! Today was also our first time to try rice cereal. Dr Kavanaugh really doesn't want her to eat much food before her surgery but our girl needs to eat! She lapped it right off the spoon like she had been doing it for weeks. We are also pretty sure that Addy is teething since she constantly stuffs her entire hand into her mouth and is drooling worse than our bulldogs.
Although I hate to miss a single minute of these moments, Mommy must go back to work. We are trying to seal a contract on a bigger house for us at the moment. We are quite excited and it would be great to have a home where we are not tripping over one another. We won't move until the spring to give Addy time to recover but none the less it is still very exciting! Well, that is most of the new news for now, I will keep everyone updated!
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