Sorry about not posting yesterday, but everything went pretty well yesterday. They did decide to do both procedures, the G Tube and the stomach wrap. It turns out that the stomach wrap is less invasive than we were origionally told. We're praising the Lord for that. The incision is really only about an inch or maybe a little longer, and they used the same incision for both procedures. Anytime they do a surgery they put her back on the ventilator, so she came back from the OR with the tube in again. They left it in overnight and took it out early this morning. Payton did well breathing, but she had a pretty fast heart rate (200-220) and a low blood pressure for over 2 hours after they removed the breathing tube. They gave her a dose of medicine and some fluids and she leveled out almost immediately. So right now she's just sleeping and hopefully getting stronger. We will start feeding her sugar water tomorrow morning and probably start with breastmilk on Friday.
So now the only thing left to do is to get her feeding well. I assume that they will put her on a feeding plan that slowly increases her feeding amounts until they reach a point that they are happy with. Then they will send us home! However, we don't really know how long this will take. You can join us in praying for Payton to continue to get strong again after her surgery yesterday, pray for her to do well with the feedings, and pray for us, that we can learn and remember all that we will need to know before we go home. Thank you.
Wednesday, May 31, 2006
Monday, May 29, 2006
Happy Memorial Day!
We hope you all had a good three day weekend! We did. We got to take Payton for her first ride in a stroller today! They unplugged her for a while and we took her for a little tour inside the hospital. It was pretty great!
The whole weekend has been good, both for Payton and us. She has been getting stronger and is in a lot less pain from the stitches on her neck. Now all she is really fussy about are wet diapers and not being able to get some of the flem up that she still gets sometimes. She had lots of visitors this weekend, grandpas and grandmas, aunts and uncles, cousins, friends from church, and friends from work.
We would appreciate your prayers tomorrow (Tuesday) because she goes in to get her G Tube. It is a fairly simple operation, but she will have to go under anesthesia again. They also talked to us about possibly having to do another, slightly more complicated operation. One of the tests they did on her was to check for acid reflux. She has a very mild reflux, so they don't think that they will have to do it, but there is still a chance that they will. This operation involves a longer incision (about 3 inches) on her abdomen to allow them to wrap her stomach around her esophagus. I don't really understand it, but this will help prevent reflux. They will decide this in the morning before she goes in to get her G Tube, which is a very small incision (less than a half inch). Since she only has mild reflux, they most likely won't elect to do this operation tomorrow, but, rather, wait and see how she does. We would appreciate your prayers for her not to have to have this other operation. Obviously, if it's something she needs, we would do it, but we are praying that even the little amount of reflux she has now will decline, and that she would not need the other operation. (I'm sorry that I keep calling it the "other operation", but I can't remember the really long name of it.)
Thank you for praying! What a priviledge to join our Savior in intercession! This looks like it could be one of the last hurdles that we will have to jump over before we can think about coming home. I think that we will still be here for about two more weeks, but I don't think that there will be any other operations after tomorrow and possibly the "other operation".
The whole weekend has been good, both for Payton and us. She has been getting stronger and is in a lot less pain from the stitches on her neck. Now all she is really fussy about are wet diapers and not being able to get some of the flem up that she still gets sometimes. She had lots of visitors this weekend, grandpas and grandmas, aunts and uncles, cousins, friends from church, and friends from work.
We would appreciate your prayers tomorrow (Tuesday) because she goes in to get her G Tube. It is a fairly simple operation, but she will have to go under anesthesia again. They also talked to us about possibly having to do another, slightly more complicated operation. One of the tests they did on her was to check for acid reflux. She has a very mild reflux, so they don't think that they will have to do it, but there is still a chance that they will. This operation involves a longer incision (about 3 inches) on her abdomen to allow them to wrap her stomach around her esophagus. I don't really understand it, but this will help prevent reflux. They will decide this in the morning before she goes in to get her G Tube, which is a very small incision (less than a half inch). Since she only has mild reflux, they most likely won't elect to do this operation tomorrow, but, rather, wait and see how she does. We would appreciate your prayers for her not to have to have this other operation. Obviously, if it's something she needs, we would do it, but we are praying that even the little amount of reflux she has now will decline, and that she would not need the other operation. (I'm sorry that I keep calling it the "other operation", but I can't remember the really long name of it.)
Thank you for praying! What a priviledge to join our Savior in intercession! This looks like it could be one of the last hurdles that we will have to jump over before we can think about coming home. I think that we will still be here for about two more weeks, but I don't think that there will be any other operations after tomorrow and possibly the "other operation".
Friday, May 26, 2006
Clothes?
When we got to the hospital this morning we were suprized to find Payton with a onezee on. Besides a knit hat and some socks she has never worn clothes before. She's a month old today, so it's probably about time she got dressed!
Yesterday was good. She went to the OR yesterday morning to have what's called a PICC line inserted. It is basically a long term IV catheter, but I cut and pasted this paragraph about it for those of you who are more curious.
A PICC is a long, very thin, soft plastic tube made of silicone or polyurethane that is placed in a small blood vessel to allow IV fluids and medications to be given. The primary reason for a PICC is to allow for IV nutrition to be given over a long period of time without having to frequently replace an IV. The normal short IV usually last only 1-3 days before needing to be replaced. A PICC can often be maintained for 2-3 weeks, or longer. Infants most likely to benefit from a PICC include very immature infants, infants with bowel problems preventing feeding, and infants who require a very long course of IV medication.
They also did some work on her neck wound. This is a direct answer to our prayers. They were able to pull the wound together and they didn't not have to do a skin graft. What they did was loosen up the skin around the edge of the wound and then pull that loose skin together and then just used stitches and some "medical superglue" to close it up in a "T" shape. While she was in the OR and under anesthesia they also removed the two skin tags that she had in front of her right ear and removed a little cartilage that was under the skin left over from the tag on her cheek that fell off a while ago. She was reintubated (back on the ventilator) for all of this, but came off it shortly after. They did not put what's called a "G Tube" in during this time though, like we thought they might. This is the tube that would go directly into her gut to feed her breastmilk. They still plan to do this soon, but they wanted to do a couple other tests first. They did one this morning to test if she has reflux. It came back undetermined. And, finally, they took out some of her stitches yesterday as well. They took out every other stitch on her chest incision and they took out some stitches from another incision she had on her abdomen. They also took out an IV line from one of her legs, so right now she just has the PICC line in and an IV line in her other leg, as well as a drainage tube in behind her ear to drain the fluid from her neck and ear skin tag stuff.
She is doing really well today though. She has a busy weekend ahead of her with a steady influx of visitors, which started this morning. We are looking forward to the visitors, however, especially after a relatively visitor-free week.
Thank you for continuing to pray for Payton. Our precious Lord has been so good. You can continue to pray that all of her incisions and scars would heal well. Also, you can pray that she would be able to begin feeding soon. Obviously, we would love to have her be able to feed orally, but we'll take the G tube method too. Finally, you can pray that she will continue to gain strength that she will need in order to coordinate the function of all of her systems on her own.
This is a picture of the booties that Payton's primary nurse made for her!
This is her with her wound vac on. It's kinda Star Wars esk.
Yesterday was good. She went to the OR yesterday morning to have what's called a PICC line inserted. It is basically a long term IV catheter, but I cut and pasted this paragraph about it for those of you who are more curious.
A PICC is a long, very thin, soft plastic tube made of silicone or polyurethane that is placed in a small blood vessel to allow IV fluids and medications to be given. The primary reason for a PICC is to allow for IV nutrition to be given over a long period of time without having to frequently replace an IV. The normal short IV usually last only 1-3 days before needing to be replaced. A PICC can often be maintained for 2-3 weeks, or longer. Infants most likely to benefit from a PICC include very immature infants, infants with bowel problems preventing feeding, and infants who require a very long course of IV medication.
They also did some work on her neck wound. This is a direct answer to our prayers. They were able to pull the wound together and they didn't not have to do a skin graft. What they did was loosen up the skin around the edge of the wound and then pull that loose skin together and then just used stitches and some "medical superglue" to close it up in a "T" shape. While she was in the OR and under anesthesia they also removed the two skin tags that she had in front of her right ear and removed a little cartilage that was under the skin left over from the tag on her cheek that fell off a while ago. She was reintubated (back on the ventilator) for all of this, but came off it shortly after. They did not put what's called a "G Tube" in during this time though, like we thought they might. This is the tube that would go directly into her gut to feed her breastmilk. They still plan to do this soon, but they wanted to do a couple other tests first. They did one this morning to test if she has reflux. It came back undetermined. And, finally, they took out some of her stitches yesterday as well. They took out every other stitch on her chest incision and they took out some stitches from another incision she had on her abdomen. They also took out an IV line from one of her legs, so right now she just has the PICC line in and an IV line in her other leg, as well as a drainage tube in behind her ear to drain the fluid from her neck and ear skin tag stuff.
She is doing really well today though. She has a busy weekend ahead of her with a steady influx of visitors, which started this morning. We are looking forward to the visitors, however, especially after a relatively visitor-free week.
Thank you for continuing to pray for Payton. Our precious Lord has been so good. You can continue to pray that all of her incisions and scars would heal well. Also, you can pray that she would be able to begin feeding soon. Obviously, we would love to have her be able to feed orally, but we'll take the G tube method too. Finally, you can pray that she will continue to gain strength that she will need in order to coordinate the function of all of her systems on her own.
This is a picture of the booties that Payton's primary nurse made for her!
This is her with her wound vac on. It's kinda Star Wars esk.
Wednesday, May 24, 2006
Wednesday
Payton went down this morning for a swallow study. For this, they take her to x-ray and have her swallow a tinted formula to see whether it goes to her stomach or down the wrong way to her lungs. She's never had a bottle before and was reluctant to take it. She did manage to get a very little bit down, and it went to her lungs. So for now we need to wait for her to get a little stronger and hopefully for her vocal chords to get better before she can orally feed. What will happen now instead is they will insert a tube directly into her stomach that will feed her and get her gut moving (she's been "fed" on IV since last Wed). She can't take a feeding tube through her nose cause it severly limits her capacity to breath with her right nasal passage blocked; so this is the other alternative.
Tomorrow she goes back to the OR for them to look at her neck and the wound vac (and possibly to put in the tube to her stomach if they're able to get it scheduled). I'm hoping they're able to remove the wound vac and close her neck up as she's in pain with the wound vac. She's just not comfortable with it on.
So that's where we're at for today. We hope you are all doing well and enjoying the wonderful weather. It's hard to believe it's Memorial Day weekend already! Enjoy time with friends and family (hopefully continued good weather) and the beginning of what I call summer-cook-out food! :)
Much love, the Joneses :)
Tomorrow she goes back to the OR for them to look at her neck and the wound vac (and possibly to put in the tube to her stomach if they're able to get it scheduled). I'm hoping they're able to remove the wound vac and close her neck up as she's in pain with the wound vac. She's just not comfortable with it on.
So that's where we're at for today. We hope you are all doing well and enjoying the wonderful weather. It's hard to believe it's Memorial Day weekend already! Enjoy time with friends and family (hopefully continued good weather) and the beginning of what I call summer-cook-out food! :)
Much love, the Joneses :)
Tuesday, May 23, 2006
Today's trip to the OR
Well, we went down to see the surgeon at 10am. He was encouraged by what he saw, but there was still a small part in the middle of the wound that needed to heal. So they are putting the wound vac back on until Thurs. when they'll take her back down to the OR to look again. If it looks better they'll close her up then. The good news, also, is that he was pretty confident that they'd just be able to close up the wound, and she wouldn't need a skin graft. So we're very grateful for that and continue to pray for healing.
We gave Payton another bath last night. They're not her favorite, but she does okay. When we get her all unbundled she just looks like a string bean - so long and lean. She's pretty cute :). We love having moments to hold her and being able to get to know our little girl. We'll be excited to introduce her to you! :)
We gave Payton another bath last night. They're not her favorite, but she does okay. When we get her all unbundled she just looks like a string bean - so long and lean. She's pretty cute :). We love having moments to hold her and being able to get to know our little girl. We'll be excited to introduce her to you! :)
Monday, May 22, 2006
Baby Burrito
We call her Baby Burrito when the nurse has her all swaddled up. She likes being bundled and being held and is learning to take her pacifier. They ended up not doing the swallow study today because she still has a weak sucking mechanism, and because she'll be in the OR tomorrow and most likely be on a breathing tube for a bit, it'll be better to wait until after that. So I'm not sure when we'll start trying to feed her. We spoke with the plastic surgeon today. They'll take the wound vac off tomorrow and see what her neck looks like. They'll either replace the wound vac for a bit longer, try to stitch it together, or do one of two kinds of skin grafts. Obviously we're praying that the third option will not be necessary.
The weather has been nice the last few days, and Aaron and I have enjoyed walking the 4 blocks to and from the house and the hospital. In other news, I don't recommend trying to eat a gyro while walking. Otherwise you look down after a few minutes to find that you have cucumber sauce that's dripped all down your front of your shirt and pants. Just something I heard somewhere that I thought I'd pass along. :)
Also, the plastic on the side of her face is from the wound vac - they "taped" her up to have a good seal on the bandage.
Sunday, May 21, 2006
The Plan
We hope that you all are doing well and enjoyed the weekend!
Payton had the pleasure of having her grandparents visit this weekend, as well as an aunt and a great aunt and uncle. There's not too much news from the weekend. Payton is doing well right now. She is still having fluid build up in her lungs, but the nurses do a great job of staying on top of it. She rutinely gets her back patted to loosen up the secretions and then gets a suction tube put down her nose to suck them out. I'm sure Payton loves every second of it!
The plan for tomorrow is to do a swallow test on her to see how her vocal cords are working. She is still not making much for sound. Her cry is basically silent. The vocal cords cover the trachea when we eat or drink, so they need to make sure that hers are able to do this before she can be fed orally. Right now she is receiveing only IV nutrition. She has had an feeding tube of breastmilk throught her nose at times, but not currently for various reasons. If this test goes well she will be able to start to try to breastfeed. If not, they will have to determine what to do next with her paralized vocal cord. Obviously, we are praying that her vocal cord will heal up and work properly.
Tuesday will also be a big day. She will be going back down to the operating room to have her neck looked at again by the plastics doctors. They will decided whether it has healed up enough to try to stretch the skin around it, bring it together, and stich it up. The other option, if the wound hasn't healed much, is to redress the wound with another wound vac and wait a few more days. We are praying that the Lord would heal her up well, and that the wound would not need a skin graft or leave a scar. While she is in the OR and under anesthesia they will probably try to remove the two small skin tags that are in front of her right ear.
That's the plan for the next couple of days. Thank you for continuing to pray and ask the Father for the life and health of Payton. We love you all and can't wait to see you!
UWEC students: We're disappointed that we missed the end of your year. We're even more disappointed that we didn't get to bring Payton home to see you all. We trust that you all finished well. For those of you leaving soon to go on Project or TREK, have a great summer. You will have the time of your lives. And, for those of you who will be around Eau Claire this summer, we hope to see you soon, but we will see you all again in the fall. We're really looking forward to trusting God along side of you to give every student an opportunity to hear the Gospel and to know our precious Jesus. How good it is to be his! Have a great summer! Hope it doesn't go by too fast. It always does for me. We love you!
Payton had the pleasure of having her grandparents visit this weekend, as well as an aunt and a great aunt and uncle. There's not too much news from the weekend. Payton is doing well right now. She is still having fluid build up in her lungs, but the nurses do a great job of staying on top of it. She rutinely gets her back patted to loosen up the secretions and then gets a suction tube put down her nose to suck them out. I'm sure Payton loves every second of it!
The plan for tomorrow is to do a swallow test on her to see how her vocal cords are working. She is still not making much for sound. Her cry is basically silent. The vocal cords cover the trachea when we eat or drink, so they need to make sure that hers are able to do this before she can be fed orally. Right now she is receiveing only IV nutrition. She has had an feeding tube of breastmilk throught her nose at times, but not currently for various reasons. If this test goes well she will be able to start to try to breastfeed. If not, they will have to determine what to do next with her paralized vocal cord. Obviously, we are praying that her vocal cord will heal up and work properly.
Tuesday will also be a big day. She will be going back down to the operating room to have her neck looked at again by the plastics doctors. They will decided whether it has healed up enough to try to stretch the skin around it, bring it together, and stich it up. The other option, if the wound hasn't healed much, is to redress the wound with another wound vac and wait a few more days. We are praying that the Lord would heal her up well, and that the wound would not need a skin graft or leave a scar. While she is in the OR and under anesthesia they will probably try to remove the two small skin tags that are in front of her right ear.
That's the plan for the next couple of days. Thank you for continuing to pray and ask the Father for the life and health of Payton. We love you all and can't wait to see you!
UWEC students: We're disappointed that we missed the end of your year. We're even more disappointed that we didn't get to bring Payton home to see you all. We trust that you all finished well. For those of you leaving soon to go on Project or TREK, have a great summer. You will have the time of your lives. And, for those of you who will be around Eau Claire this summer, we hope to see you soon, but we will see you all again in the fall. We're really looking forward to trusting God along side of you to give every student an opportunity to hear the Gospel and to know our precious Jesus. How good it is to be his! Have a great summer! Hope it doesn't go by too fast. It always does for me. We love you!
Saturday, May 20, 2006
Saturday Morning
Hello Friends! Sorry we didn't post anything yesterday. I know many of you check our blog fairly often, and it's probably disappointing not to find anything new. Thanks for going to Father on our behalf anyway though. The reason we didn't post anything yesterday is because we were too busy holding Payton!
Right now she is doing very good. She is still off the breathing tube and her lungs are fairly clear. She keeps getting stronger and stronger. She has all but stopped having the arrhythmias for now as well. She still has a couple IV lines and lots of wires and tubes attatched, so holding her is a bit of an ordeal. She will keep these lines, tubes, and wires in and on her for a number of day still. After this weekend, the doctors plan to look at her vocal cords again and see how the paralized one is doing. After that they will determine if she can start to try to feed or not. On Tuesday the plastic surgen will take the wound vac off and check her neck. Our hope for that time is that he will either say that it's looking good and just needs the wound vac on for a little longer, or that he will go ahead and try to close the wound. A skin graft is still last resort, and we are still trusting the Lord that this won't be necessary. Thank you for joining us in prayer for these things.
Here are some new pics! Enjoy!
Here's Payton before she got her breathing tube out.
Okay, we know that these are silly, but we just wanted to thank those of you who have sent us care packages and cards and lots of other great stuff. We love it, and we love you! Thanks so much!
Here's our little family.
Right now she is doing very good. She is still off the breathing tube and her lungs are fairly clear. She keeps getting stronger and stronger. She has all but stopped having the arrhythmias for now as well. She still has a couple IV lines and lots of wires and tubes attatched, so holding her is a bit of an ordeal. She will keep these lines, tubes, and wires in and on her for a number of day still. After this weekend, the doctors plan to look at her vocal cords again and see how the paralized one is doing. After that they will determine if she can start to try to feed or not. On Tuesday the plastic surgen will take the wound vac off and check her neck. Our hope for that time is that he will either say that it's looking good and just needs the wound vac on for a little longer, or that he will go ahead and try to close the wound. A skin graft is still last resort, and we are still trusting the Lord that this won't be necessary. Thank you for joining us in prayer for these things.
Here are some new pics! Enjoy!
Here's Payton before she got her breathing tube out.
Okay, we know that these are silly, but we just wanted to thank those of you who have sent us care packages and cards and lots of other great stuff. We love it, and we love you! Thanks so much!
Here's our little family.
Thursday, May 18, 2006
Still Going
Well, she still has her breathing tube out. We're grateful for that. We were even able to hold her a little this morning. She's had some arrhythmia (irregular heart rhythms) which started yesterday evening and has continued off and on. Her left lung has a good bit of fluid still in it, and the cardiologist thinks that may be the cause of the arrhythmia. So they are turning her frequently and suctioning out some of the fluid to try to get rid of it. Her blood pressure, blood gasses, and oxygenation is good, though, so that's a good sign.
She's looking more content, and it was quite enjoyable to hold her :). She just settled in and looked around. We'll continue to keep you posted...little baby steps forward :).
She's looking more content, and it was quite enjoyable to hold her :). She just settled in and looked around. We'll continue to keep you posted...little baby steps forward :).
Wednesday, May 17, 2006
Cautiously optimistic...
Well, it's been a full day. Currently it's about 7:30pm and Payton is still extubated and doing well. At round three of trying to get her breathing tube out permanently, we're hopeful but I know I'm pretty guarded in that hope as it's been very disappointing when they've had to put the tube back in. At this point, though, she's doing really well. She's breathing good; her blood gasses look good (getting rid of the carbon dioxide which was a problem on Sunday); and she was even sucking on her pacifier - a very good sign since we'll have to teach her to feed as well. So today... they picked her up at noon to take her to the OR. They took off the dead skin on her neck and put on a wound vac - this is supposed to do a lot to help in healing and helps remove excess fluid there. Then the ENT doctors looked at her passages and everything looks good. Then they extubated her, and she's been okay since then. ENT came up again later in the afternoon when she was more awake to look at her vocal chords, and one side is paralyzed - they'll see if this resolves itself in time or if more attention is needed in the future. So that's where we're at right now. If she's able to remain extubated, there's a good chance that we could hold her tomorrow, and that would be wonderful :).
Tuesday, May 16, 2006
Sweet Baby
Yesterday Payton was pretty mellow. She was awake all morning until 2 when ENT (ear/nose/throat) came to look at her nasal passages, and she was given a little more sedation. We took a picture of her awake cause she just looked so cute :). We forgot the camera cord, however, and will post the picture tommorrow. Her right nasal passage is pretty much completely blocked, and right now she is getting a CT scan (x-ray) to look at her a little more to see if they can find anything. Tomorrow morning she is scheduled to go down to the OR and have ENT look at her again with her breathing tube out. Also, while she is sedated, plastics is going to remove some of the dead skin from her neck and put a dressing on it. The doctor today said that it's looking like she will need a skin graft. We have been and still are praying that the Lord would just heal that area completely. We ask that you'd pray for that as well. It's just been hard to have such a nasty peripheral issue on top of heart surgery.
We have some sweet moments with her in the day when we're able to just sit next to her bed and talk to her and enjoy her. Then there's moments when it's just hard to walk into the hospital for another day or hear things like they might need to do a skin graft. But one thing we do know is that the Lord gave us a sweet, sweet baby.
Thank you so much for your prayers. Please keep praying for her neck to heal completely and for the doctors to have greater insight as to why she struggles getting off her breathing tube (whether time and more growth is needed or it's something else). We are grateful that her heart and lungs continue to look good and praise God for that. We'll continue to let you know what we find out in the next couple of days.
Much love, the Joneses
We have some sweet moments with her in the day when we're able to just sit next to her bed and talk to her and enjoy her. Then there's moments when it's just hard to walk into the hospital for another day or hear things like they might need to do a skin graft. But one thing we do know is that the Lord gave us a sweet, sweet baby.
Thank you so much for your prayers. Please keep praying for her neck to heal completely and for the doctors to have greater insight as to why she struggles getting off her breathing tube (whether time and more growth is needed or it's something else). We are grateful that her heart and lungs continue to look good and praise God for that. We'll continue to let you know what we find out in the next couple of days.
Much love, the Joneses
Monday, May 15, 2006
This weekend...
First let me give brief explanation to the pictures - The top I was able to hold Payton, the next is her sweet little face, Aaron holding her, and then momma giving her a bath - she wasn't very happy about it.
Now, here's where we're at... They did extubate her (breathing tube out) yesterday morning. She was a little shaky in the beginning but then did really well. Then she got shaky again aroun noonish. So, they let me hold her a few minutes before they intubated her again (breathing tube back in). She just wasn't getting the carbon dioxide out of her system very well. Her lungs looked great (and still look great), and so, the doctor was thinking that maybe there was something wrong with her trachea or something else related to ear/nose/throat that's hindering her breathing. So he called her heart surgeon who came by this morning. We got here early today to speak with her doctors (they travel in clusters) to see what they said. Her heart surgeon agreed that we need to have the ENT doctors (ear/nose/throat) look at her to see if there's an explanation from that end for why she struggles with getting off her breathing tube. So they should be looking at her sometime in the next day or two. She has to go to the OR for them to look at her so they can remove the breathing tube to look at her throat and vocal chords - the OR is needed for adequate respiration and anesthesia with the breathing tube out - they don't need to make any incisions. When they're able to schedule her down there is when she'll get checked out.
So, yesterday was my first Mother's Day. It was pretty disappointing to have to have that breathing tube put back in. I was really looking forward to finally being able to hold her for awhile, but it was fun to give her a little sponge bath and fuss with her a bit. With her tube out they needed to keep her awake, even upset, to keep her breathing good. So the bath worked at keeping her somewhat upset :). After they intubated her, though, she was out. She didn't sleep a lot on Sat., and we had to keep her awake all Sun. morning. So she was just exhausted and slept the rest of the day.
We'll let you know what happens with the ENT doctors when she goes in - we don't know when that'll be. Hopefully sooner rather than later. Again, thank you so much for all your prayers and encouragement - cards, emails, posts, and packages - we really appreciate it. Much love, Aaron and Heather :)
Now, here's where we're at... They did extubate her (breathing tube out) yesterday morning. She was a little shaky in the beginning but then did really well. Then she got shaky again aroun noonish. So, they let me hold her a few minutes before they intubated her again (breathing tube back in). She just wasn't getting the carbon dioxide out of her system very well. Her lungs looked great (and still look great), and so, the doctor was thinking that maybe there was something wrong with her trachea or something else related to ear/nose/throat that's hindering her breathing. So he called her heart surgeon who came by this morning. We got here early today to speak with her doctors (they travel in clusters) to see what they said. Her heart surgeon agreed that we need to have the ENT doctors (ear/nose/throat) look at her to see if there's an explanation from that end for why she struggles with getting off her breathing tube. So they should be looking at her sometime in the next day or two. She has to go to the OR for them to look at her so they can remove the breathing tube to look at her throat and vocal chords - the OR is needed for adequate respiration and anesthesia with the breathing tube out - they don't need to make any incisions. When they're able to schedule her down there is when she'll get checked out.
So, yesterday was my first Mother's Day. It was pretty disappointing to have to have that breathing tube put back in. I was really looking forward to finally being able to hold her for awhile, but it was fun to give her a little sponge bath and fuss with her a bit. With her tube out they needed to keep her awake, even upset, to keep her breathing good. So the bath worked at keeping her somewhat upset :). After they intubated her, though, she was out. She didn't sleep a lot on Sat., and we had to keep her awake all Sun. morning. So she was just exhausted and slept the rest of the day.
We'll let you know what happens with the ENT doctors when she goes in - we don't know when that'll be. Hopefully sooner rather than later. Again, thank you so much for all your prayers and encouragement - cards, emails, posts, and packages - we really appreciate it. Much love, Aaron and Heather :)
Saturday, May 13, 2006
Green light - Red light
Well, it's been a little back and forth today. First they were planning on taking her breathing tube out this morning, and then they decided to wait a little longer...then a little longer...and now we're waiting 'til tomorrow. She seems pretty much ready, but her doctor wants to be a little more certain. So they're giving her another day. It's "wait and see" each day. Her doctor this week has been wonderful, though, and we're grateful for his care and consideration.
Thank you so much for your prayers yesterday. It scared me pretty bad, but the pediatric cardiologist wasn't as worried since her blood pressure and oxygenation was good. I'd still much rather not have these little "episodes". As she gets more awake she gets flat out mad and lets us know it. But she's been poked and prodded and with tubes pretty much since she was born - so I can't say I blame her. Her neck is still looking pretty aweful - some of the dead skin is peeling away. It's a good 2 inches in diameter which on a baby stretches from just under her jaw line to her collar bone. We just keep praying for total healing and restoration there as well.
We have the grandparents and 2 of my friends from highschool here today, and she's had lots of lovin' :). That's about all for today. We'll let you know what happens tomorrow.
Happy Mother's Day to all the moms out there!
Thank you so much for your prayers yesterday. It scared me pretty bad, but the pediatric cardiologist wasn't as worried since her blood pressure and oxygenation was good. I'd still much rather not have these little "episodes". As she gets more awake she gets flat out mad and lets us know it. But she's been poked and prodded and with tubes pretty much since she was born - so I can't say I blame her. Her neck is still looking pretty aweful - some of the dead skin is peeling away. It's a good 2 inches in diameter which on a baby stretches from just under her jaw line to her collar bone. We just keep praying for total healing and restoration there as well.
We have the grandparents and 2 of my friends from highschool here today, and she's had lots of lovin' :). That's about all for today. We'll let you know what happens tomorrow.
Happy Mother's Day to all the moms out there!
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