Which is a very good thing.
C is not in the hospital now for any reason other than waiting for GI to come and place the feeding tube. Supposedly they are going to place the feeding tube on Wednesday. Of course there is always a chance that will not happen and they do not get around to placing the tube until Thursday or Friday. We were really pushing for Tuesday but they said they just could not get her on the schedule for Tuesday. Don't know why, but that is what GI said.
So, we try to be as normal as we can while living in a hospital which does not allow for any kind of normal living. C is out of her normal environment and off her normal routine. She cannot leave the hospital and only very recently has been allowed to actually leave her room. Getting out does help everyone's sanity. Unfortunately with C being in a cardiac ICU we just cannot have the parade of visitors that we would so welcome to help break up the tedium. Back here in the ICU they get a little particular about allowing in germs and such...gee, I wonder why? Anyway. Living in a hospital is really horrible. Especially when we are living here only because we have to wait on getting a relatively minor and easy procedure done. I guess this is the penance we must pay for being so stubborn in the first place about C getting a feeding tube. If we had moved forward with this 5 months ago, shoot, we would be home sleeping in our own beds tonight. Instead, I have been listening to C whine and cry for the last hour because she does not want to be put down in the hospital crib, she is all hopped up on the 15 different drugs she is getting every hour or so because they all have different times they must be given, she hates the nurses messing with her (and for some unknown reason the doctors still want vitals checked every 4 hours...they already know her blood pressure refuses to drop much below 90 and hovers around 100...continuously, for the past 48 hours, on the same drug schedule...grrrrrrrr), she has been annoyed the last hour because the stupid blood pressure cuff does not work and the nurse keeps trying to take it, and of course just when she stopped screaming and actually went to sleep (2 hours past her normal bed time) the nurse comes in to move the stupid cuff because it is not working and wakes her up and she starts crying all over again...and for some completely unfathomable reason the cleaning people must empty the trash in the babies/kids rooms at 10:30 at night. Seriously. Hey people, the last time I checked my daughter is no longer all drugged up on fententyl and versed and living in sleepy land 24 hours a day. We are trying to be as normal as possible, per the doctors, but you are all making.it.impossible.
Can you tell I am a tad frustrated. And this is my first full night here. Stupid hospital.
I have no problem with most of the above (with the exception of why it is absolutely critical to get the trash in the middle of the night, disrupting sleeping babies/kids), the doctors and nurses are just doing their job after all, however, it makes it very hard to tolerate when we are only here because some other doctor just can't quite get us in the schedule.
So here we sit. And wait. For something that everyone tells us is so darned important yet apparently not important enough to do, you know like today. All the other doctors were here today. Apparently the GI's had better things to do. Can you tell I am really not liking the GI's right now. And just so you all know, this is the same group that we have been seeing, the same group who supposedly understands how critical it is that C get her feeding tube.
Breathe in.....breathe out....
Sunshine and rainbows....
Anyway.
Kevin is back at home with the boys. I am sure they were ecstatic to see him and be back in our home. Got to talk to them briefly tonight on skype. C got to see them and blow kisses. She so loves them.
We are hoping that we can be discharged Friday. That would be the earliest if all goes to plan and goes well. Here's to hoping.
Monday, May 31, 2010
All My Fault
(Yesterday, Sunday, May 30)
Ok. So sorry for the lack of updates for the past two days. For those who do not already know I have been horribly sick the past 2 1/2 days with what I am pretty sure is food poisoning. Truly horrid....and I hate vomiting. I was super concerned I might have rotavirus which would have really sucked because then I would have been out of C's room for a VERY long time. But, with food poisoning once it runs it course it is gone and I am allowed back in her room.
I was so very happy and excited to finally see C again.
She looked like a different baby to me at first.
She has scabs from where the tape has burned her face and neck. She is so thin, including her face and head (no longer puffy). She has bruises and cuts and pokes and scrapes. Her eyes are a little bruised.
And yet, she still looked beautiful.
She has had to fight a little harder this time but she has made it through. Her blood pressure still remains a little high, even with all the medications she is receiving and in turn her lung pressure is still a little high. However, her heart is functioning very well and her flow remains good. Her sats are a little lower than that what we have been used to but that is to be expected. She is finally running where she should be but it will take us a little to get used to it.
I think she would more than likely be discharged tomorrow but because of her eating and our insistence on getting a g tube this time we are stuck her for a bit longer. The timing on this has been totally off. Due to her not hitting her stride in her recovery until the end of week and then this being a holiday weekend, the earliest she can get the tube placed is Wednesday. Ugh. If she gets the tube Wednesday, then she will not be able to use it until Thursday. Then the observation to make sure it is working and she is tolerating it. So, the earliest we are getting out of here is next Friday. We so did not want this to happen like this but oh well, we do not have much choice now. I talked with the doctors this morning and they all agree it will be best for her to stay then to go home and come back. They are afraid that if she goes home then the GI docs will not have a sense of urgency about getting her tube placed and it could be weeks before we can get scheduled.
Plus, the benefit of staying here is that C gets to have my favorite intensivist help with her procedure, do the sedation and she gets to have the whole thing done in the icu where if there is a problem everyone (including cardio surgeons) can be here immediately to help her. So, while it is totally stinky to have to live in the hospital for another week, this will be the best option.
C's eating is getting better. Still not where it should be but better. And she is still not vomiting. Yay for small steps!
We do have a little more freedom now. C has absolutely nothing hooked up. All her lines are gone. Her last remaining iv blew yesterday so they took it out. She still has her ekg leads on and her pulse ox on but she does not need to be hooked up to the monitors all the time. She only needs to be hooked up for the nurses vital checks and at night when she is sleeping. So we are able to walk around a little bit. At least it helps to get out of the room a little.
Kevin will be going back home tomorrow to be with the boys. They have been having a blast with Kevin's parents, who have been sweet enough to put up with them for the past week. I miss them but they have been doing well and having so much fun with the start of their summer vacation I am not sure they have been missing me any! Will be so very happy when we can all be home together soon.
Thank you again for all the prayers for C. I know they have been heard. C is here today and is back to her old self. She has not lost one little thing. She is still babbling, smiling. laughing, sitting up, scooting around, calling me mama and Kevin dada, chewing on everything, playing with her toys and in general being her normal self. I am so very, very relieved. I was so very scared that even if she pulled through she would lose something and I think one of the hardest things to deal with is watching the lose of potential. Seeing what you could have or did have and just watch it all disappear. But, I have not had to do that and I am forever grateful that we have more time with C.
Ok. So sorry for the lack of updates for the past two days. For those who do not already know I have been horribly sick the past 2 1/2 days with what I am pretty sure is food poisoning. Truly horrid....and I hate vomiting. I was super concerned I might have rotavirus which would have really sucked because then I would have been out of C's room for a VERY long time. But, with food poisoning once it runs it course it is gone and I am allowed back in her room.
I was so very happy and excited to finally see C again.
She looked like a different baby to me at first.
She has scabs from where the tape has burned her face and neck. She is so thin, including her face and head (no longer puffy). She has bruises and cuts and pokes and scrapes. Her eyes are a little bruised.
And yet, she still looked beautiful.
She has had to fight a little harder this time but she has made it through. Her blood pressure still remains a little high, even with all the medications she is receiving and in turn her lung pressure is still a little high. However, her heart is functioning very well and her flow remains good. Her sats are a little lower than that what we have been used to but that is to be expected. She is finally running where she should be but it will take us a little to get used to it.
I think she would more than likely be discharged tomorrow but because of her eating and our insistence on getting a g tube this time we are stuck her for a bit longer. The timing on this has been totally off. Due to her not hitting her stride in her recovery until the end of week and then this being a holiday weekend, the earliest she can get the tube placed is Wednesday. Ugh. If she gets the tube Wednesday, then she will not be able to use it until Thursday. Then the observation to make sure it is working and she is tolerating it. So, the earliest we are getting out of here is next Friday. We so did not want this to happen like this but oh well, we do not have much choice now. I talked with the doctors this morning and they all agree it will be best for her to stay then to go home and come back. They are afraid that if she goes home then the GI docs will not have a sense of urgency about getting her tube placed and it could be weeks before we can get scheduled.
Plus, the benefit of staying here is that C gets to have my favorite intensivist help with her procedure, do the sedation and she gets to have the whole thing done in the icu where if there is a problem everyone (including cardio surgeons) can be here immediately to help her. So, while it is totally stinky to have to live in the hospital for another week, this will be the best option.
C's eating is getting better. Still not where it should be but better. And she is still not vomiting. Yay for small steps!
We do have a little more freedom now. C has absolutely nothing hooked up. All her lines are gone. Her last remaining iv blew yesterday so they took it out. She still has her ekg leads on and her pulse ox on but she does not need to be hooked up to the monitors all the time. She only needs to be hooked up for the nurses vital checks and at night when she is sleeping. So we are able to walk around a little bit. At least it helps to get out of the room a little.
Kevin will be going back home tomorrow to be with the boys. They have been having a blast with Kevin's parents, who have been sweet enough to put up with them for the past week. I miss them but they have been doing well and having so much fun with the start of their summer vacation I am not sure they have been missing me any! Will be so very happy when we can all be home together soon.
Thank you again for all the prayers for C. I know they have been heard. C is here today and is back to her old self. She has not lost one little thing. She is still babbling, smiling. laughing, sitting up, scooting around, calling me mama and Kevin dada, chewing on everything, playing with her toys and in general being her normal self. I am so very, very relieved. I was so very scared that even if she pulled through she would lose something and I think one of the hardest things to deal with is watching the lose of potential. Seeing what you could have or did have and just watch it all disappear. But, I have not had to do that and I am forever grateful that we have more time with C.
Thursday, May 27, 2010
Still Taking Steps Forward
C did well last night even if she did not get that much sleep. Poor baby is so gunky in her chest, throat and nose from being on the ventilator and she is having a hard time clearing it out. The nurse has had to suction her nose and throat several times and she hates it. I don't blame her one bit, I would hate it too. It just looks awful. Even worse, the first two times she stopped breathing as if she had gunk caught in her throat. Very scary. Her lips turned purple and her sats very dropping. She finally cleared it and was fine but still horrid to watch.
She was able to start eating again last night and so far she is doing pretty good. She is taking more than she usually does but still not up to what she should be taking. We are taking it easy on her right now because she does still have lots of stuff going on.
C is continuing on an upswing but it seems to me that it is much slower this time. Maybe I am just not remembering the last surgery very accurately but she seemed to be more her normal self at this point last time. I guess I am just worrying too much (and impatient to get her home!) and she will continue to make slow progress. Progess, even slow, is so much better than the alternative and I will learn to have more patience.
Everything seems to be pretty good so far. The only issue she is having is that her pulmonary pressure and blood pressure are still on the high side. She will be getting her normal blood pressure med and she will be getting Viagra now as well. I know if sounds weird but Viagra was originally used to help people like C who need some help with relaxing all the vessels and stuff in the lungs. Yesterday the cardiologist was talking to me about it and she did not think C would need to be on it permanetly but we will see.
C has been taking a nap this morning and resting so I am hopeful that means she will start feeling better too because right now she just seems so miserable. I can hardly stand watching her look so darn miserable.
Thank you all so much for all of your prayers. I know that they have really made a difference. I was very scared two nights ago that Carolena just may not pull through as she was struggling so hard. I can only thank all of you and of course God for seeing that C really wants to be here with us for awhile longer. I can honestly say I have never been more scared since this journey with C began. I am very humbled to know so many are following C's journey and are touched enough with her and her story to keep praying for her. She is truely amazing and I wish everyone could see how beautiful, sweet, happy, playful, smiley and engaging she is.
She was able to start eating again last night and so far she is doing pretty good. She is taking more than she usually does but still not up to what she should be taking. We are taking it easy on her right now because she does still have lots of stuff going on.
C is continuing on an upswing but it seems to me that it is much slower this time. Maybe I am just not remembering the last surgery very accurately but she seemed to be more her normal self at this point last time. I guess I am just worrying too much (and impatient to get her home!) and she will continue to make slow progress. Progess, even slow, is so much better than the alternative and I will learn to have more patience.
Everything seems to be pretty good so far. The only issue she is having is that her pulmonary pressure and blood pressure are still on the high side. She will be getting her normal blood pressure med and she will be getting Viagra now as well. I know if sounds weird but Viagra was originally used to help people like C who need some help with relaxing all the vessels and stuff in the lungs. Yesterday the cardiologist was talking to me about it and she did not think C would need to be on it permanetly but we will see.
C has been taking a nap this morning and resting so I am hopeful that means she will start feeling better too because right now she just seems so miserable. I can hardly stand watching her look so darn miserable.
Thank you all so much for all of your prayers. I know that they have really made a difference. I was very scared two nights ago that Carolena just may not pull through as she was struggling so hard. I can only thank all of you and of course God for seeing that C really wants to be here with us for awhile longer. I can honestly say I have never been more scared since this journey with C began. I am very humbled to know so many are following C's journey and are touched enough with her and her story to keep praying for her. She is truely amazing and I wish everyone could see how beautiful, sweet, happy, playful, smiley and engaging she is.
Wednesday, May 26, 2010
Moving Forward
C is off the ventilator. That is correct. She is off the ventilator. She was aggressively weaned down all morning and once the intensivist thought she was awake enough and breathing on her own enough he went ahead and pulled the tube. She needed a tiny bit of stimulation to get her going but she has been doing good ever since. I thought for sure he would make me leave but he said I could stay and help hold her. He said he would only ask me to leave if he had to do some further action like bag/mask or even reinsert the tube. I got to tell you, these doctors have nerves of steel. I was pretty terrified of what C was going to do once her tube came out and at one point I did walk out of her room. But, I went back in and stayed with her and got her to settle down and go back to sleep.
She is currently sleeping pretty peacefully. She does have a nasal canula and is getting oxygen and nitric oxide through the canula. She of course hates the thing blowing in her nose but I keep telling her it is A LOT better than a tube down her throat. Her narcotic pain med drip has been stopped (the fentenoyl) and her sedation drip (versed) has been weaned down. The doctors want her to start coming to and waking up. Get back to her normal self. Her foley catheter was also removed so she is peeing all on her own. Next step will be to see if she will eat. Doctor has not mentioned it yet but maybe tomorrow. She still has a long, long way to go but I think we have turned the corner and C is on the upswing.
I cannot even tell you all how much your comments and prayers have meant to me and Kevin. At some points in the night, reading all of your comments, and knowing how many people where sending up prayers on C's behalf was the only thing keeping me from completely breaking down. Yesterday was a very long day, I think Kevin, me and mom were awake for 20 straight hours. Hopefully we can all get a little more sleep tonight.
She is currently sleeping pretty peacefully. She does have a nasal canula and is getting oxygen and nitric oxide through the canula. She of course hates the thing blowing in her nose but I keep telling her it is A LOT better than a tube down her throat. Her narcotic pain med drip has been stopped (the fentenoyl) and her sedation drip (versed) has been weaned down. The doctors want her to start coming to and waking up. Get back to her normal self. Her foley catheter was also removed so she is peeing all on her own. Next step will be to see if she will eat. Doctor has not mentioned it yet but maybe tomorrow. She still has a long, long way to go but I think we have turned the corner and C is on the upswing.
I cannot even tell you all how much your comments and prayers have meant to me and Kevin. At some points in the night, reading all of your comments, and knowing how many people where sending up prayers on C's behalf was the only thing keeping me from completely breaking down. Yesterday was a very long day, I think Kevin, me and mom were awake for 20 straight hours. Hopefully we can all get a little more sleep tonight.
Tomorrow is Another Day After All...
If you were following me on Facebook last night you already know that C took a major downturn early last night. Her sats dropped, she was on 100% oxygen and she was still struggling. Even with the vent all the way up she could not maintain her sat level around 75-80 like the doctors wanted her to be. She was sedated more and more (she is still so very, very stoned) and yet she still struggled. I was very scared.
She got another blood transfusion, lots of warm blankets and some changed vent settings that actually stabilized her. When I left around 12:45am she was actually calm and stable. Kevin stayed the rest of the night/early morning with her and she maintained her stable levels and actually improved. Poor baby is really fighting hard right now.
However, the doctors are all okay with her numbers this morning so aggressive vent weaning has begun, She has already been lowered to 60% oxygen on the vent and is tolerating it well. The next step is to lower her nitric oxide and see if she still tolerates it. Once that is lowered she will be extubated. The intensivist said it will be a high risk extubation for her and she may have a very adverse pulmonary reaction (ie turn really blue). If that happens he will immediately put the breathing tube back in and she will be back on the vent to try again another day. He wants her off the vent as quickly as she can be as the vent puts negative pressure on her Glenn shunt. So far she is tolerating the vent weaning very well. The key will be if her lungs have adjusted enough at this point to keep her oxygen sats up on her own. She will still be getting oxygen through a mask/nasal canula to help but she has got to do it on her own.
Other than this very serious issue with getting her lungs to cooperate with the lower pulmonary pressures she is doing very well. Her heart function is great and the repairs are awesome. Her chest xrays still look clear (no junk or infection setting in) and she is not running a fever. The best thing about getting the tube out and off the vent is that C will be able to be awake more and move around more. She will not have to be so sedated.
I am humbly asking for everyone to pray for a very successful extubation today. Not exactly sure when the doctors will be trying to pull the tube but will let you all know the results as soon as I can. I know absolutely that all the prayers being said for her last night pulled her through to this morning. C is fighting hard right now. Her body is doing the best it can. She just needs some extra help from all of you praying for her. Thank you all so very much.
She got another blood transfusion, lots of warm blankets and some changed vent settings that actually stabilized her. When I left around 12:45am she was actually calm and stable. Kevin stayed the rest of the night/early morning with her and she maintained her stable levels and actually improved. Poor baby is really fighting hard right now.
However, the doctors are all okay with her numbers this morning so aggressive vent weaning has begun, She has already been lowered to 60% oxygen on the vent and is tolerating it well. The next step is to lower her nitric oxide and see if she still tolerates it. Once that is lowered she will be extubated. The intensivist said it will be a high risk extubation for her and she may have a very adverse pulmonary reaction (ie turn really blue). If that happens he will immediately put the breathing tube back in and she will be back on the vent to try again another day. He wants her off the vent as quickly as she can be as the vent puts negative pressure on her Glenn shunt. So far she is tolerating the vent weaning very well. The key will be if her lungs have adjusted enough at this point to keep her oxygen sats up on her own. She will still be getting oxygen through a mask/nasal canula to help but she has got to do it on her own.
Other than this very serious issue with getting her lungs to cooperate with the lower pulmonary pressures she is doing very well. Her heart function is great and the repairs are awesome. Her chest xrays still look clear (no junk or infection setting in) and she is not running a fever. The best thing about getting the tube out and off the vent is that C will be able to be awake more and move around more. She will not have to be so sedated.
I am humbly asking for everyone to pray for a very successful extubation today. Not exactly sure when the doctors will be trying to pull the tube but will let you all know the results as soon as I can. I know absolutely that all the prayers being said for her last night pulled her through to this morning. C is fighting hard right now. Her body is doing the best it can. She just needs some extra help from all of you praying for her. Thank you all so very much.
Tuesday, May 25, 2010
In C's Room
Been with C now for 2 hours and she is stable. She is still on the vent and will be for at least tonight and well into tomorrow. Her lungs needs to catch up. The increased pressure she has been living with for the past 5 months causes there to be residual "memory" in the lungs. The doctors are all thinking that her lungs will start to respond to the new lower pressures and lower blood flow. Once her lungs catch up and she does not need so much O2 and NO to keep her sats up she will be extubated. I will be praying really hard tonight that her body and lungs start responding so she can get moving on with her recovery. I know it does not seem like it but C is really sick right now. One of the doctors mentioned he was really surprised she had gone so long and done so well with the pulmonary obstruction and elevated lung pressures. Not really what we want to hear right now but it just reminds me that C is not a normal baby. She is unique, different, complicated and she is so beautiful. I hate that her pretty blue eyes are so drugged she cannot even pull them into focus but I know her body is getting the rest it needs. I will be so happy when I can see recognition in her eyes again.
I know we have said it before so please excuse me for repeating but these next 24 hours are so very critical. This first overnight period is so iffy. Right now she looks like she is doing well but we know that it can change quickly. Kevin and I will be taking shifts tonight so she will not be alone. Even though she is out of it, she is aware and knows we are here. I do not want her to be scared on top of everything else.
Thank you all so very much for the prayers, positive thoughts and good vibes being sent her way. C is one tough little girl but we know she cannot do this alone. I am very grateful for every single one of you and all the prayers you are sending up on her behalf.
I know we have said it before so please excuse me for repeating but these next 24 hours are so very critical. This first overnight period is so iffy. Right now she looks like she is doing well but we know that it can change quickly. Kevin and I will be taking shifts tonight so she will not be alone. Even though she is out of it, she is aware and knows we are here. I do not want her to be scared on top of everything else.
Thank you all so very much for the prayers, positive thoughts and good vibes being sent her way. C is one tough little girl but we know she cannot do this alone. I am very grateful for every single one of you and all the prayers you are sending up on her behalf.
C is in Recovery
and doing well. Her heart is functioning fine. The scar tissue turned out to be membrane and not tissue. The surgeon is not exactly sure why it formed but he went ahead and removed it. He also removed her pulmonary artery from the heart. Her sats are running a tad low right now. The surgeon thinks because she has had high pulmonary pressures by now removing that pressure will keep her sats lower for a little while. He expects her sats to rebound back to her more nomal levels after a few days. He did say it could take a month. There is a very good chance she will be intubated for a little while so the doctors can control the level of oxygen in her blood. I am praying she will not have to stay on the vent long but it is all up to C. Everything else went well. Thanks so much for all the prayers and good thoughts. Please keep them coming as the next 24 hours will be critical, not only to get her off the vent but to also not have any clots, strokes, etc.
Subscribe to:
Posts (Atom)