Sorry for the lack of a post yesterday-- we thought a quick update had posted but obviously we were wrong. Regardless, Madeleine is doing great and we're pretty sure that she'll be released this afternoon. The only potential issue is that she's on a slightly higher oxygen percentage than we usually have at home but no one seems concerned about it right now. The assumption is that her belly is a little sore from the surgery and therefore, she's not breathing as deep so as not to agitate it.
That's it for now. I'm running late this morning but I'll post once we get her home. Have a great start to your week.
Monday, May 18, 2009
Saturday, May 16, 2009
So far, so good
Madeleine is doing really well post-surgery and we're tracking three areas: pain management, vent settings, and progress with feeding. In terms of pain management, things are going very well. Since last evening, she's mostly been managed with tylenol- she had one dose of morphine before sleep and only one more dose this morning around 7am. Since that dose, she's only gotten tylenol and is generally happy. She is back to smiling and playing and we're very happy.
Her vent settings are also doing well. She is back to her home CPAP aetting, meaning that the she is breathing on her own with only pressure support from the vent. She's still slightly elevated on oxygen as her level is 50%. At home, she gets between 1 to 1.5 liters which is roughly equivalent to 30% oxygen. Once they get her down to 30%, they will transfer her off the hospital vent back to her home vent.
The final issue is her feeding and that is also going well. So far, she is getting half her fluids into her stomach and half in her IV. Soon, they will shut off the IV and will give all of her fluids via the new PEG(g-tube). They will also substitute half od the pedialyte with formula and will monitor her GI status. If all goes well, they will increase her formula level in the morningam
In short, things are going very well. We still have a long ways to go and we know that setbacks are possible. Still, we are very pleased with Madeleine's progress and we're enjoying seeing her face without tape. We'll provide an update tomorrow. Thanks!
Her vent settings are also doing well. She is back to her home CPAP aetting, meaning that the she is breathing on her own with only pressure support from the vent. She's still slightly elevated on oxygen as her level is 50%. At home, she gets between 1 to 1.5 liters which is roughly equivalent to 30% oxygen. Once they get her down to 30%, they will transfer her off the hospital vent back to her home vent.
The final issue is her feeding and that is also going well. So far, she is getting half her fluids into her stomach and half in her IV. Soon, they will shut off the IV and will give all of her fluids via the new PEG(g-tube). They will also substitute half od the pedialyte with formula and will monitor her GI status. If all goes well, they will increase her formula level in the morningam
In short, things are going very well. We still have a long ways to go and we know that setbacks are possible. Still, we are very pleased with Madeleine's progress and we're enjoying seeing her face without tape. We'll provide an update tomorrow. Thanks!
Friday, May 15, 2009
Phew!
Madeleine is out of surgery and everything went great. The surgeon talked with us for quite a while and said that things couldn't have gone better. We're obviously elated.
In terms of recovery, Madeleine is in some pain and they are going to keep her fairly sedated tonight. So long as she recovers well, they will trial her with pedialyte tomorrow and then will slowly work her feeds up. So long as that goes well, we could be out as early as Monday. We always know that Madeleine could take a down turn but so far, things have gone exceedingly well.
Thanks- we'll post updates throughout the weekend. At some point we'll also get a camera in here so that we can post some pictures without tape on her face. She looks great but it is going to take some getting used to seeing her whole face.
In terms of recovery, Madeleine is in some pain and they are going to keep her fairly sedated tonight. So long as she recovers well, they will trial her with pedialyte tomorrow and then will slowly work her feeds up. So long as that goes well, we could be out as early as Monday. We always know that Madeleine could take a down turn but so far, things have gone exceedingly well.
Thanks- we'll post updates throughout the weekend. At some point we'll also get a camera in here so that we can post some pictures without tape on her face. She looks great but it is going to take some getting used to seeing her whole face.
Tuesday, May 12, 2009
And the Winner is....
For those of you that guessed the 3+ times that Madeleine will pull out her feeding tube, pat yourself on your back as Madeleine just pulled her tube out this morning making it the fourth time in a week that we've had to take her to radiology-- before that we'd, gone exactly one month with the same tube... Argh. Its rather frustrating. Other than that, things are going well. I was home this morning to meet with the Physical/Occupational therapist and she continues to be impressed with Madeleine's progress. Madeleine has greatly improved her sitting ability-- a direct result of her increased core strength and she continues to improve with tummy time and her fine motor skills. Today, we noticed a pretty strong preference for her right hand so we talked about insisting when we play that she use her left hand. Additionally, we talked about the importance of short bursts of tummy time throughout the day-- especially once we get out of surgery and she's cleared to start working again-- and also talked about the importance of using certain words repeatedly when playing particular games. As one example, the therapist said that it is important to say "boo" or something like that every time we play peekabo as this teaches Madeleine when to communicate and what to say. Its very interesting and helpful to meet with the therapist as she takes our games and daily routines and teaches us how we can reinforce little concepts-- very helpful and cool.
That's all-- I'm working from home for a bit-- a great aspect of the new job-- and then will be taking her in for what we hope will be her last visit to radiology (at least for an NJ tube). Have a good one.
Brent
That's all-- I'm working from home for a bit-- a great aspect of the new job-- and then will be taking her in for what we hope will be her last visit to radiology (at least for an NJ tube). Have a good one.
Brent
Monday, May 11, 2009
Family Photo
Quick post this morning-- we thought you'd enjoy this new "family photo" that we took this weekend to show our solidarity with Madeleine in her last week with the tape mustache. Surgery is still scheduled for this Friday and we're very nervous yet excited all at the same time. Have a great week!
Friday, May 8, 2009
Two New Tubes
We're one week away from the G-tube surgery and while we're always worried about surgery, we can't wait to get rid of the NJ tube-- Madeleine pulled it out onTuesday night and the replacement gave us trouble yesterday so we got it replaced last night. We used to call the radiology department and calmly asked for an appointment-- now I just call and say "This is Madeleine's dad-- when can I bring her in?"
Other than the tube drama, this week has been pretty normal. If the rain doesn't stop soon, I'm going to start building an ark in my garage but today so far is looking good. My mom and Aunt Donna are visiting as is Donna's daughter Liz. Its nice to have extra hands to play with Madeleine and its fun to see her smiling at all of the new faces. Madeleine continues to be extremely happy and she's slowly improving her sitting ability-- we think this is the next step before she will start to crawl etc. Its slow progress but progress all the same and we expect that progress will increase once we get through the surgery.
Oh yeah, the surgery is scheduled and this week, we got final approval to go forward. The important factor in moving forward was getting clearance from our cardiologist that her pulmonary hypertension is under control. We went to the hospital on Wednesday and the echocardiogram showed that Madeleine's PH is fully under control. She's not cured as she's still on medicine for the PH but the doctors are confident that she is ready for surgery and furthermore are confident that the PH is slowly improving. (There is no quick fix for PH so this is the best possible news.)
That's all for now-- I apologize for the lack of pictures. My new job is great but they are more restrictive on picture uploading than my past job and since I don't have a personal PC, i've got to figure out a method for uploading pictures and videos... I hope to find some time this weekend.
Other than the tube drama, this week has been pretty normal. If the rain doesn't stop soon, I'm going to start building an ark in my garage but today so far is looking good. My mom and Aunt Donna are visiting as is Donna's daughter Liz. Its nice to have extra hands to play with Madeleine and its fun to see her smiling at all of the new faces. Madeleine continues to be extremely happy and she's slowly improving her sitting ability-- we think this is the next step before she will start to crawl etc. Its slow progress but progress all the same and we expect that progress will increase once we get through the surgery.
Oh yeah, the surgery is scheduled and this week, we got final approval to go forward. The important factor in moving forward was getting clearance from our cardiologist that her pulmonary hypertension is under control. We went to the hospital on Wednesday and the echocardiogram showed that Madeleine's PH is fully under control. She's not cured as she's still on medicine for the PH but the doctors are confident that she is ready for surgery and furthermore are confident that the PH is slowly improving. (There is no quick fix for PH so this is the best possible news.)
That's all for now-- I apologize for the lack of pictures. My new job is great but they are more restrictive on picture uploading than my past job and since I don't have a personal PC, i've got to figure out a method for uploading pictures and videos... I hope to find some time this weekend.
Monday, May 4, 2009
Battles with the Pulse Ox
Madeleine had another good weekend-- she was a bit slow/lethargic this weekend and we're chalking it up to a growth weekend as well as her reaction to the gloomy DC weather-- its been raining for about 3 days now and its forecast to continue until next Sunday. Ugh.
For the past few weeks, we've been having some trouble with Madeleine's oxygen saturation rate when she first falls asleep. During the day, the nurses only spot check her sat rate as it is impossible to keep the monitor on Madeleine when she's awake and moving. She kicks the thing off and loves playing with it as it has a bright red light when turned on. For a kid that can put her foot in her mouth (literally), the pulse ox is just too tempting-- she pulls it off in less than 3 seconds when awake. When she falls asleep, we usually take her into the crib and set her up for the night which includes turning on the pulse ox and for the past two weeks, we've seen extremely low sat rates-- in the 70s when we put her down. (Healthly folks are always above 95 and we don't like to see Madeleine below 90.) What's strange is that when the machine reads in the 70s, Madeleine looks fine. We've been trained to "look at the child" but we've also been trained that the machines can pick up data that the naked eye can't see. Inevitably, Kirsten and I have worked frantically each night to improve Madeleine's sat rates-- we suction, we turn her on her side, we increase the oxygen, when especially desperate-- we change the trach, we hold and rock her, and many times we bicker with each other-- its just kinda how we react when nervous and don't know what to do.
Finally, Kirsten took Madeleine to the pulmonary clinic on Friday-- we had a schedule visit with the GI clinic and we learned that the pulse ox machine wasn't reading correctly. Our home machine was reading in the low 80s when they arrived at the hospital but the hospital monitor showed a perfect 100 sat rate. I can't tell you how frustrating that is to know that we've spent so many nights worrying about something that looks to be a machine error. We ended up getting a new machine over the weekend and while it still isn't perfect, its giving us better readings.
The other two things we focused on this weekend is resolving Madeleine's runny nose issues and also discussing what she's going to look like without her "tape mustache." We're less than two weeks away from surgery to remove the NJ tube and replace with the G tube and we can't wait to see her without the tape on her face. In her 13 months alive, we've only seen her without tape at her birth and at the random times when she pulls out her tube. (FYI-- since posting the survey, we haven't had to go back to the hospital for a new tube... keep your fingers crossed that the streak remains intact for the next 11 days.) The runny nose is a bit more problematic-- we have been concerned that Madeleine was fighting a cold for the past few weeks as she's had a runny nose for weeks but every test we've done has come back negative. The doctors don't think Madeleine could have full blown allergies-- it takes a few years to develop allergies-- but right now we're chalking the extra snot up to "seasonal sensitivities." I'm not sure how this differs from allergies-- I'm sure there is some clinical difference-- but the end result is that Madeleine has a snotty nose and needs to be suctioned quite a bit.
As far as life for Kirsten and I, we're doing really well. I've completed my first week in my new job and so far, everything is great. I'm doing some pretty cool work (google 287(g) to find out about the program I'm working on-- note: its fairly controversial) and the folks I work with are really great. Kirsten continues to do great at her job-- wouldn't expect any less-- and we're even starting to talk about taking a vacation at the end of the summer/early fall. Its been so long since we even discussed something like that, it almost seems taboo...
alright-- gotta run. have a great week and if in DC, try to stay dry.
That's all for right now.
For the past few weeks, we've been having some trouble with Madeleine's oxygen saturation rate when she first falls asleep. During the day, the nurses only spot check her sat rate as it is impossible to keep the monitor on Madeleine when she's awake and moving. She kicks the thing off and loves playing with it as it has a bright red light when turned on. For a kid that can put her foot in her mouth (literally), the pulse ox is just too tempting-- she pulls it off in less than 3 seconds when awake. When she falls asleep, we usually take her into the crib and set her up for the night which includes turning on the pulse ox and for the past two weeks, we've seen extremely low sat rates-- in the 70s when we put her down. (Healthly folks are always above 95 and we don't like to see Madeleine below 90.) What's strange is that when the machine reads in the 70s, Madeleine looks fine. We've been trained to "look at the child" but we've also been trained that the machines can pick up data that the naked eye can't see. Inevitably, Kirsten and I have worked frantically each night to improve Madeleine's sat rates-- we suction, we turn her on her side, we increase the oxygen, when especially desperate-- we change the trach, we hold and rock her, and many times we bicker with each other-- its just kinda how we react when nervous and don't know what to do.
Finally, Kirsten took Madeleine to the pulmonary clinic on Friday-- we had a schedule visit with the GI clinic and we learned that the pulse ox machine wasn't reading correctly. Our home machine was reading in the low 80s when they arrived at the hospital but the hospital monitor showed a perfect 100 sat rate. I can't tell you how frustrating that is to know that we've spent so many nights worrying about something that looks to be a machine error. We ended up getting a new machine over the weekend and while it still isn't perfect, its giving us better readings.
The other two things we focused on this weekend is resolving Madeleine's runny nose issues and also discussing what she's going to look like without her "tape mustache." We're less than two weeks away from surgery to remove the NJ tube and replace with the G tube and we can't wait to see her without the tape on her face. In her 13 months alive, we've only seen her without tape at her birth and at the random times when she pulls out her tube. (FYI-- since posting the survey, we haven't had to go back to the hospital for a new tube... keep your fingers crossed that the streak remains intact for the next 11 days.) The runny nose is a bit more problematic-- we have been concerned that Madeleine was fighting a cold for the past few weeks as she's had a runny nose for weeks but every test we've done has come back negative. The doctors don't think Madeleine could have full blown allergies-- it takes a few years to develop allergies-- but right now we're chalking the extra snot up to "seasonal sensitivities." I'm not sure how this differs from allergies-- I'm sure there is some clinical difference-- but the end result is that Madeleine has a snotty nose and needs to be suctioned quite a bit.
As far as life for Kirsten and I, we're doing really well. I've completed my first week in my new job and so far, everything is great. I'm doing some pretty cool work (google 287(g) to find out about the program I'm working on-- note: its fairly controversial) and the folks I work with are really great. Kirsten continues to do great at her job-- wouldn't expect any less-- and we're even starting to talk about taking a vacation at the end of the summer/early fall. Its been so long since we even discussed something like that, it almost seems taboo...
alright-- gotta run. have a great week and if in DC, try to stay dry.
That's all for right now.
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