Well, Taylor has been home from the hospital for two weeks and we are now 4 weeks out from her surgery. All is well here at home, if a bit hectic! But it would be that way anyway for us. :)
Taylor was released with a feeding tube on July 11, which she promptly pulled out the first night and we did not fight her to put it back in. We have worked hard with her to increase her bottle feeds and she is doing really well. She is also taking solids in small amounts again with her new favs being avocado and hummus! She gained about 6 ounces between doctor's appointments in the last 10 days and is finally over 16 pounds!
Every day she continues to get better. Her personality, vocalizations and almost all of her motor skills are back. She is still struggling to roll over which she could do before surgery, but she is working at it. She is kind of like a turtle stranded on its back when she is in her crib except she gets stuck on her belly and screams till we come get her. She is sleeping well - usually all night or at least until 4 or 5 AM when she gets hungry and then goes back to sleep till around 7.
Jason and I went back to work for part of the week last week and the majority of the week this week. My brother, sister in law and their two kids are coming Thursday and we are looking forward to some time with them this coming weekend.
Overall her follow-up appointments went very well. Pediatrician thought she looked great and doesn't need to see her (unless she's sick) till her 9 month appointment in September. The pulminologist also thought she looked fantastic, especially since he saw her in the hospital on the vent and right when she came off. He is not particularly happy that her SATs hang out in the mid to upper 70s, but is willing to live with that if the cardiologist is happy. We don't have to see him again until late September unless something changes with her breathing. She will remain on her daily nebulizer to keep her airways open and will start an asthma inhaler in August just to protect her airways as much as possible going into the fall allergy and cold season.
We had our follow-up with the cardio on Friday and he was very pleased and actually didn't have much to say - which is a GREAT thing! Her echo looked good and the Glenn is functioning just as the team hoped it would. Her blood pressure is right where it needs to be and she has good profusion. All things that make the heart doctors happy! We talked about her SATs being in the 70s and whether or not that should be a concern and the answer was NO. Basically his opinion is that she was diagnosed late, has had two major surgeries close together which drastically changed her anatomy and her body is tolerating all of the these changes extremely well and she looks fantastic. He expects that she will only get better. That does not mean her SATs will necessarily go up but as her lungs heal and she grows there is hope they will. No cause for concern unless she seems "bluer" or SATs consistenly are lower. If that is the case then we might have to take her in for a Cath to see what is going on or plan for the Fontan a bit early. I think the real telling comment was that he doesn't need to see us for 3 months - the end of October!!! I was shocked and so relieved at the same time. Right now the next surgery is not until she is 2.
The only other tidbit is that her clot seems to still be resolving itself and her left leg is a bit bluer than the right. The blood vessels will eventually work around the clot and it should dissolve. For now Taylor will stay on aspirin every other day and we will schedule an ultrasound on her leg as a follow-up.
Thank you for the continued prayers, calls, cards, emails, meals, gift cards for dinners, offers to babysit and so much more. We have been so blessed!!! Taylor is a mighty little girl and we look forward to seeing you out and about with her very soon!
Sunday, July 26, 2009
Sunday, July 12, 2009
Taylor is Home!!!
Praise God!!!
Taylor was discharged from the hospital on Saturday, July 11. After a long day of getting set to go - learning how to replace her feeding tube, having a pump delivered, 3 pharmacies to get her meds and nebulizers, we are finally home and all sleeping in our own beds.
Taylor is doing well and making it know that she does not want to deal with a feeding tube. We are working with her to take all of her feeds by bottle as well as oral meds. Many of the medicines she only has to be on this week to finish out. She pulled out her tube again last night and we are not going to replace it at this point unless she gets really behind on eating.
Looking forward to being out and about with Taylor soon as she gets stronger.
Love to all,
The Goodloes
Taylor was discharged from the hospital on Saturday, July 11. After a long day of getting set to go - learning how to replace her feeding tube, having a pump delivered, 3 pharmacies to get her meds and nebulizers, we are finally home and all sleeping in our own beds.
Taylor is doing well and making it know that she does not want to deal with a feeding tube. We are working with her to take all of her feeds by bottle as well as oral meds. Many of the medicines she only has to be on this week to finish out. She pulled out her tube again last night and we are not going to replace it at this point unless she gets really behind on eating.
Looking forward to being out and about with Taylor soon as she gets stronger.
Love to all,
The Goodloes
Friday, July 10, 2009
July 109, 2009
Big sigh....
Still here. Taylor continues to struggle with clearing the mucus and congestion out of her upper airway. Adding an additional nebulizer treatment this evening to see if it helps. Everyone has cleared her to go home except the pulminologist. Feeding is still an issue though earlier today she took 6 ounces by bottle in two different feedings. We are trying to do it all by bottle right now to see is she has the stamina to do that. The GI doc wants us to go home on a feeding tube and gradually wean her off as her strength improves. The pulmonologist would prefer to get the tube out to see if that helps Taylor clear everything out. We are trying our best to feed her when she seems up to it. It was an exhausting afternoon for Taylor (and me and Jason), but we will keep on, keeping on.
I was pleased to hear that the orders for all the medical equipment we may need were written and being worked on by Kaiser this afternoon so hopefully there won't be any delay once we are discharged. Lots of meds to give for a few weeks and probably several nurse "weight check" visits. Jason and I will be taught how to put in the tube as well as give Taylor the shot of anti-coag med she will need for a bit longer. All things we can handle if it means getting Taylor home!!!
It is amazing what a change of environment does for her. We have walked her around and taken her to the courtyard on the pediatric floor and she LOVES the stimulation. The therapists have been very happy with how she is progressing physically and that she is starting to smile and play again. We feel that getting her home will only enhance the speed of her recovery.
Hope you enjoy a beautiful weekend! We hope to share very good news about Taylor's homecoming very, very soon. Please pray for that!
Still here. Taylor continues to struggle with clearing the mucus and congestion out of her upper airway. Adding an additional nebulizer treatment this evening to see if it helps. Everyone has cleared her to go home except the pulminologist. Feeding is still an issue though earlier today she took 6 ounces by bottle in two different feedings. We are trying to do it all by bottle right now to see is she has the stamina to do that. The GI doc wants us to go home on a feeding tube and gradually wean her off as her strength improves. The pulmonologist would prefer to get the tube out to see if that helps Taylor clear everything out. We are trying our best to feed her when she seems up to it. It was an exhausting afternoon for Taylor (and me and Jason), but we will keep on, keeping on.
I was pleased to hear that the orders for all the medical equipment we may need were written and being worked on by Kaiser this afternoon so hopefully there won't be any delay once we are discharged. Lots of meds to give for a few weeks and probably several nurse "weight check" visits. Jason and I will be taught how to put in the tube as well as give Taylor the shot of anti-coag med she will need for a bit longer. All things we can handle if it means getting Taylor home!!!
It is amazing what a change of environment does for her. We have walked her around and taken her to the courtyard on the pediatric floor and she LOVES the stimulation. The therapists have been very happy with how she is progressing physically and that she is starting to smile and play again. We feel that getting her home will only enhance the speed of her recovery.
Hope you enjoy a beautiful weekend! We hope to share very good news about Taylor's homecoming very, very soon. Please pray for that!
Wednesday, July 8, 2009
Wednesday July 8, 2009
12 days post surgery - looking great!
We are still here in the hospital...but continue to move forward, so we are trying to be patient.
Found out that Taylor has a mild urinary tract infection along with a wicked cough. Started antibiotics today. Sounds like her congestion is moving out of her chest and she is working hard to get rid of it. She is able to maintain her SATs without the assistance of oxygen and seems overall to be breathing comfortably. She continues to receive nebulizer treatments and chest/back PT to help move all the mucus up and out. Also found out that the anti-coagulant she is on was not strong enough to break up the clot in her leg. Her leg looks great, but she will continue to recieve shots twice a day until it is gone, which might continue when she heads home.
The cardiologists are very pleased and want to move her out of here as quickly as possible which right now sounds like may be this weekend. Still have to move the feeding tube back up to the stomach, tolerate it there and then move back to the bottle. The way Taylor is mouthing her toys and trying to suck on things, Jason and I don't anticipate a problem there. :)
Her incision scar looks amazing and she is already tolerating tummy time, especially to sleep. This evening she even played for a while and I saw one little smile. I was so excited that I made a big fuss which ended up making her cry.
Overall things are looking up. Keep up those prayers! We want Taylor to be completely healthy and stable so that she can enjoy being at home - and stay there!!!
I am staying with her tonight and looking forward to hearing how Cameron did in the swim meet. He was going to try to swim butterfly! :) Em is doing OK - very anxious and clingy when I leave. I keep telling her that as soon as Taylor is well I will be home. Our babysitter Genevive is wonderful and has really been helpful in keeping the kids' routine.
We have had visits this week from friends Elisabeth, Carolyn and Miriam and lots of offers to come by. Since Taylor had a little fever and nasty cough we have limited contact a bit, but now she is looking great. Looking forward to seeing Jason's sister Blaine and our nephew Jake this weekend and my aunt and grandmother later next week - hopefully at home!!!
July 9: Taylor had a GREAT night!!! No need for Oxygen and she was very feisty and played quite a bit. Had a bit of trouble settling the two hours prior to her lowered Methadone dose, but once she had that she slept peacefully even through two nebulizer treatments! She also pulled out her feeding tube for the second time and the doctors agreed to leave it up in her stomach rather than put it back down in her intestine. Way to go Taylor - you just advanced another step and made your wishes known.
Found out that Taylor has a mild urinary tract infection along with a wicked cough. Started antibiotics today. Sounds like her congestion is moving out of her chest and she is working hard to get rid of it. She is able to maintain her SATs without the assistance of oxygen and seems overall to be breathing comfortably. She continues to receive nebulizer treatments and chest/back PT to help move all the mucus up and out. Also found out that the anti-coagulant she is on was not strong enough to break up the clot in her leg. Her leg looks great, but she will continue to recieve shots twice a day until it is gone, which might continue when she heads home.
The cardiologists are very pleased and want to move her out of here as quickly as possible which right now sounds like may be this weekend. Still have to move the feeding tube back up to the stomach, tolerate it there and then move back to the bottle. The way Taylor is mouthing her toys and trying to suck on things, Jason and I don't anticipate a problem there. :)
Her incision scar looks amazing and she is already tolerating tummy time, especially to sleep. This evening she even played for a while and I saw one little smile. I was so excited that I made a big fuss which ended up making her cry.
Overall things are looking up. Keep up those prayers! We want Taylor to be completely healthy and stable so that she can enjoy being at home - and stay there!!!
I am staying with her tonight and looking forward to hearing how Cameron did in the swim meet. He was going to try to swim butterfly! :) Em is doing OK - very anxious and clingy when I leave. I keep telling her that as soon as Taylor is well I will be home. Our babysitter Genevive is wonderful and has really been helpful in keeping the kids' routine.
We have had visits this week from friends Elisabeth, Carolyn and Miriam and lots of offers to come by. Since Taylor had a little fever and nasty cough we have limited contact a bit, but now she is looking great. Looking forward to seeing Jason's sister Blaine and our nephew Jake this weekend and my aunt and grandmother later next week - hopefully at home!!!
July 9: Taylor had a GREAT night!!! No need for Oxygen and she was very feisty and played quite a bit. Had a bit of trouble settling the two hours prior to her lowered Methadone dose, but once she had that she slept peacefully even through two nebulizer treatments! She also pulled out her feeding tube for the second time and the doctors agreed to leave it up in her stomach rather than put it back down in her intestine. Way to go Taylor - you just advanced another step and made your wishes known.
More later once we hear from the doctors...
Monday, July 6, 2009
Monday July 6, 2009
Today has been a busy day for Taylor at the hospital. Seemed like everyone was catching up from the holiday weekend and checking in. She was seen by the speech therapist, OT and PT and we were given suggestions for exercises to help her get moving and also to get her back on the bottle from and off the feeding tube.
Her oxygen saturation has been steadily increasing to the upper 70s to 82 since she was started on nebulizer treatments yesterday afternoon. They have really helped with her congestion and this afternoon the pulminologist was pleased with her progress and didn't see any significant differences in her chest x ray from Friday. Good news overall...
However, she does still have the clot in her left groin area and there has been discussion about whether or not it has gotten bigger or stayed the same. The radiologist feels it has increased in size while the cardiologist feels that we can't really judge its size since it was first noticed when her central line was there and her leg has improved (reduced swelling and better color) since the line came out Friday morning. She will have a blood test later tonight to check on the level of the anti-coagulant in her system and to determine next steps for the clot issue. Jason and I feel her leg looks remarkably better but we'll wait to see what the blood work looks like. Dr. Thompson, the cardiologist who did the cath procedure on her two weeks ago feels that her body will resolve this herself and he wants to wait and see what happens.
When her blood is drawn tonight they will also do some blood cultures because Taylor has had a slight fever today (99.5-100.7). It has come down this afternoon which is encouraging but she has had a urine culture and will have her blood looked at to be safe since her white blood count has increased since it was taken on July 1. She could be fighting a virus or an infection related to the clot so the doctors want to cover all bases and rule things out. Fine with us.
On the feeding front - her tube was moved up from her intestine to her stomach and we will see overnight how she tolerates the stomach processing her food (blood pressure, heart rate, breathing, etc.) before trying her on the bottle tomorrow. The speech clinician will come back tomorrow to see how she does and make recommendations.
Taylor has been a very sleepy girl today - almost all day! She was awake for some of the morning and for about 45 minutes this afternoon. We think her body is either fighting against whatever virus she might have and/or just catching up after several restless nights. My hope is that she stays stable and comfortable through the night so I can sleep too - but we shall see what happens.
Please continue to pray for Taylor's recovery and especially for her to clear the recent hurdles we are encountering. She "looks" great!
Jason, Cam, Em and I are doing well juggling home and hospital and keeping regular family routines as much as possible. We are very grateful to our good friends the Johnsons for hosting us on 4th of July, Vicki McGorty for coordinating meals for us over the last week and into the future, our pastors for continually checking in on us and for all of your calls and emails. We will continue to keep everyone posted and hope for more positive news to share tomorrow or Wednesday.
Love,
Taylor, Amy, Jason, Cameron and Emileigh
Her oxygen saturation has been steadily increasing to the upper 70s to 82 since she was started on nebulizer treatments yesterday afternoon. They have really helped with her congestion and this afternoon the pulminologist was pleased with her progress and didn't see any significant differences in her chest x ray from Friday. Good news overall...
However, she does still have the clot in her left groin area and there has been discussion about whether or not it has gotten bigger or stayed the same. The radiologist feels it has increased in size while the cardiologist feels that we can't really judge its size since it was first noticed when her central line was there and her leg has improved (reduced swelling and better color) since the line came out Friday morning. She will have a blood test later tonight to check on the level of the anti-coagulant in her system and to determine next steps for the clot issue. Jason and I feel her leg looks remarkably better but we'll wait to see what the blood work looks like. Dr. Thompson, the cardiologist who did the cath procedure on her two weeks ago feels that her body will resolve this herself and he wants to wait and see what happens.
When her blood is drawn tonight they will also do some blood cultures because Taylor has had a slight fever today (99.5-100.7). It has come down this afternoon which is encouraging but she has had a urine culture and will have her blood looked at to be safe since her white blood count has increased since it was taken on July 1. She could be fighting a virus or an infection related to the clot so the doctors want to cover all bases and rule things out. Fine with us.
On the feeding front - her tube was moved up from her intestine to her stomach and we will see overnight how she tolerates the stomach processing her food (blood pressure, heart rate, breathing, etc.) before trying her on the bottle tomorrow. The speech clinician will come back tomorrow to see how she does and make recommendations.
Taylor has been a very sleepy girl today - almost all day! She was awake for some of the morning and for about 45 minutes this afternoon. We think her body is either fighting against whatever virus she might have and/or just catching up after several restless nights. My hope is that she stays stable and comfortable through the night so I can sleep too - but we shall see what happens.
Please continue to pray for Taylor's recovery and especially for her to clear the recent hurdles we are encountering. She "looks" great!
Jason, Cam, Em and I are doing well juggling home and hospital and keeping regular family routines as much as possible. We are very grateful to our good friends the Johnsons for hosting us on 4th of July, Vicki McGorty for coordinating meals for us over the last week and into the future, our pastors for continually checking in on us and for all of your calls and emails. We will continue to keep everyone posted and hope for more positive news to share tomorrow or Wednesday.
Love,
Taylor, Amy, Jason, Cameron and Emileigh
Saturday, July 4, 2009
Happy 4th!
Taylor continues to make steady progress. She was moved
from PICU to the regular pediatric floor Friday evening
and will move again to a private room later today. Yippee!!!
She still has a feeding tube and we are working with the doctors
To get approval for her to try a bottle before Monday when
She will have a speech eval. She will also have a follow up
Ultrasound on her left leg to make sure the clot is breaking up
Where her central line was. 8 Days Post surgery
The hardest part now is waiting and trying to keep her on her
Back! Every time she can she is trying to figure out how to
Roll over. Tough to do with an IV, feeding tube and wires taped
To your chest, not to mention a healing incision!
She looks great! I will try to post moe pictures soon. I am
Writing this from my blackberry as I don't have my computer
Jason is doing some activities with the kids and then will stay the night tonight.
Thanks again for your continued prayers, calls, emails, meals and help with Cameron and Emileigh. We hope to continue to be able to share good news.
LOL and Happy 4th of July!!!
from PICU to the regular pediatric floor Friday evening
and will move again to a private room later today. Yippee!!!
She still has a feeding tube and we are working with the doctors
To get approval for her to try a bottle before Monday when
She will have a speech eval. She will also have a follow up
Ultrasound on her left leg to make sure the clot is breaking up
Where her central line was. 8 Days Post surgery
The hardest part now is waiting and trying to keep her on her
Back! Every time she can she is trying to figure out how to
Roll over. Tough to do with an IV, feeding tube and wires taped
To your chest, not to mention a healing incision!
She looks great! I will try to post moe pictures soon. I am
Writing this from my blackberry as I don't have my computer
Jason is doing some activities with the kids and then will stay the night tonight.
Thanks again for your continued prayers, calls, emails, meals and help with Cameron and Emileigh. We hope to continue to be able to share good news.
LOL and Happy 4th of July!!!
Thursday, July 2, 2009
July 1 and 2, 2009 Updates
6 days post surgery...
Wednesday was such a busy day that I didn’t have the chance to write and now things are moving so quickly here that it is hard to keep up.
Taylor has made great progress since yesterday afternoon. Her breathing tube was removed and she was transitioned to a high humidity nasal canula with some oxygen support (40-60%). She remained sedated because every time she woke up she struggled with her tubes and lines and seemed very agitated. However, during the night all of her drip medications were stopped and her feedings increased. This morning when we arrived she had been moved to a private room in PICU from the cardiac corner room which was wide open. Also her catheter had been removed and other monitoring devices which tracked her brain and kidney function.
Jason and I listened in on rounds this morning and the plan for the day is to continue to “deaccessorize”. This morning her arterial line was removed as well as her central line in her groin. Now she just has one regular IV line, a feeding tube and the nasal canula support. She has been awake and alert and moving around without much discomfort. Taylor is still groggy but the goal is to get her fully awake so she will not be receiving any more sedatives only pain meds when she seems to be in pain. She is also receiving some Heparin (blood thinner) because she has some swelling and a small clot in her left leg where the central line was. This does not seem to be a major concern and is expected to break up and heal on its own.
She is on some heavy meds to wean her off of the Fentanol (painkiller/sedative) including Methadone. She will be stepped down off of it over several days and may actually be sent home on it as well to finish the protocol. We have been told that this might cause her some insomnia or possibly keep her groggy and with limited appetite for a few days. Good to know!
All in all a great two days for Taylor. Her color is great and she has even started talking a bit again now that the tube is out. The doctors are pleased with her heart performance and now that her heart rate is steadily above 120 they plan to remove the pacemaker as well. Yippee!
We also met with the feeding team this morning and discussed how to transition her back to the bottle and solids. Once she is off the nasal canula she can start to take a bottle. A speech consult has been requested but since Taylor already receives speech through early intervention and Jason and I have already been dealing with her feeding issues (thickened formula and food) the team wrote in her chart to consult with us about her needs. Yippee! That means she won’t be held back from taking a bottle until Monday when the speech clinician can see her. Everyone here seems to be gearing up for the holiday weekend (which starts tomorrow!) and we are hoping that we are moving closer to the door – maybe to “step down care” on the regular pediatric ward.
Not sure when this will get posted as there is no wireless connection today at the hospital…so no email access, etc.
Wednesday was such a busy day that I didn’t have the chance to write and now things are moving so quickly here that it is hard to keep up.
Taylor has made great progress since yesterday afternoon. Her breathing tube was removed and she was transitioned to a high humidity nasal canula with some oxygen support (40-60%). She remained sedated because every time she woke up she struggled with her tubes and lines and seemed very agitated. However, during the night all of her drip medications were stopped and her feedings increased. This morning when we arrived she had been moved to a private room in PICU from the cardiac corner room which was wide open. Also her catheter had been removed and other monitoring devices which tracked her brain and kidney function.
Jason and I listened in on rounds this morning and the plan for the day is to continue to “deaccessorize”. This morning her arterial line was removed as well as her central line in her groin. Now she just has one regular IV line, a feeding tube and the nasal canula support. She has been awake and alert and moving around without much discomfort. Taylor is still groggy but the goal is to get her fully awake so she will not be receiving any more sedatives only pain meds when she seems to be in pain. She is also receiving some Heparin (blood thinner) because she has some swelling and a small clot in her left leg where the central line was. This does not seem to be a major concern and is expected to break up and heal on its own.
She is on some heavy meds to wean her off of the Fentanol (painkiller/sedative) including Methadone. She will be stepped down off of it over several days and may actually be sent home on it as well to finish the protocol. We have been told that this might cause her some insomnia or possibly keep her groggy and with limited appetite for a few days. Good to know!
All in all a great two days for Taylor. Her color is great and she has even started talking a bit again now that the tube is out. The doctors are pleased with her heart performance and now that her heart rate is steadily above 120 they plan to remove the pacemaker as well. Yippee!
We also met with the feeding team this morning and discussed how to transition her back to the bottle and solids. Once she is off the nasal canula she can start to take a bottle. A speech consult has been requested but since Taylor already receives speech through early intervention and Jason and I have already been dealing with her feeding issues (thickened formula and food) the team wrote in her chart to consult with us about her needs. Yippee! That means she won’t be held back from taking a bottle until Monday when the speech clinician can see her. Everyone here seems to be gearing up for the holiday weekend (which starts tomorrow!) and we are hoping that we are moving closer to the door – maybe to “step down care” on the regular pediatric ward.
Not sure when this will get posted as there is no wireless connection today at the hospital…so no email access, etc.
We look forward to sharing more news soon. As always, thank you for your continued prayers for Taylor's recovery.
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