Janessa is getting so big, she's now finally starting to walk with me while I hold her hands, as soon as she gets a bit of balance to her step I'm sure she will be off soon! Janessa's vocabulary has really advanced as well, she refers to our cat as kitty kitty kitty, and is starting to have a large variety of words to match objects or wants with. Not much is really going on with Miss Janessa which I am extremely happy about. She went to Children's hospital on Friday for a Kidney Ultrasound and urology examination, her kidneys look great, and her bladder is big as always which is good for Janessa's kidneys.
Not much else to write, except she will be getting her GJ placed on the 22nd of this month
Monday, December 12, 2011
Friday, November 11, 2011
November 11th 2011: The Transplant Team...
Came in and talked with us yesterday, I was really expecting them, but I guess that is normal, they seem to come in at random appointments. The overall appointment went good yesterday, she brought her weight back up from when she was sick a few weeks ago, and and is eating wonderfully, but when I talk to transplant team about her DX I always get set back into reality that really no adult with MMIHS has made it into adulthood, and it's only been a few years that TPN has changed for the better as a long term solution. They always seem to push me to consider transplant without exactly coming out and saying it, but I just don't know how I feel about it, her quality of life is great right now, is this the perfect opportunity to do the transplant now despite the risks, will she be too sick later to even deal with it if we wait, and suffer from more complications, I just don't know... It's just one of those decisions I really don't want to make, and hope that no one will ever understand.
I know I am kind of going off on a tangent, but I seem to always get upset when I read about children who get a cold or have a sinus infection and parent's are devastated by it, I know I shouldn't get upset by it, but I could only dream that I could be so upset about a cold with my child, I mean a fever for Janessa means rushing to children's for days, watching her receive IV antibiotics, and risking her life, compared to a normal child who you just give tylenol to and they eventually get better. I know it may sound selfish but I wish people would shut up and just be thankful that their child is healthy! I know I might get some harsh hating reactions on this one, I shouldn't think this way but sometimes it's hard not to...
Back to the realm of Janessa, ICARE was talking about placing a GJ into her tummy to try and get some tube feeds into her intestines and see what happens! I am kind of excited about this idea, and hope it has some success with Janessa's feedings, it would be nice, but I am not going to get my hopes up because with MMIHS it's not something that is curable, and surly not anything with a great success rate in feeds... I'll let you know when that'll be scheduled for her...
December 9th Janessa goes to urology to have an ultrasound on her kidney's to see if everything is okay there, she hasn't been contracting any urine like she used to, it's been months so who knows what they will find, hopefully everything is alright, and there is no reflux!
I know I am kind of going off on a tangent, but I seem to always get upset when I read about children who get a cold or have a sinus infection and parent's are devastated by it, I know I shouldn't get upset by it, but I could only dream that I could be so upset about a cold with my child, I mean a fever for Janessa means rushing to children's for days, watching her receive IV antibiotics, and risking her life, compared to a normal child who you just give tylenol to and they eventually get better. I know it may sound selfish but I wish people would shut up and just be thankful that their child is healthy! I know I might get some harsh hating reactions on this one, I shouldn't think this way but sometimes it's hard not to...
Back to the realm of Janessa, ICARE was talking about placing a GJ into her tummy to try and get some tube feeds into her intestines and see what happens! I am kind of excited about this idea, and hope it has some success with Janessa's feedings, it would be nice, but I am not going to get my hopes up because with MMIHS it's not something that is curable, and surly not anything with a great success rate in feeds... I'll let you know when that'll be scheduled for her...
December 9th Janessa goes to urology to have an ultrasound on her kidney's to see if everything is okay there, she hasn't been contracting any urine like she used to, it's been months so who knows what they will find, hopefully everything is alright, and there is no reflux!
Tuesday, November 1, 2011
November 1st 2011: An update, but I'd rather it not be so.
Last week Monday as many of you probably already know Janessa was hospitalized because she broke her central line. Usually with a central line they are able to repair and we go on our way, well that wasn't the case, the surgeons put a 5 french single lumen line in her chest and Children's didn't have a repair kit for it(nowhere in the Pittsburgh area did) so she was left to have to get her line replaced. I wasn't too happy about this ordeal because that was a risk for her to lose more access space(which is vital for chronic TPN patients), luckily they got the line threaded back into the same spot, and they put a size 4 lumen back in which was a positive for us! The whole procedure went well, and of course we were sent home later that evening.
Everything was great for a few days until Sunday morning when I was changing Janessa I noticed her central line site was swollen, pussing, and it felt HOT! I took her temperature at first and it said 99.9, I gave it about an hour to see if maybe she was just hot from being in warm PJs, well that hour later her temperature was 100.4 so we took her down the children's to get it checked out. Janessa had a weird smell coming off her while we were in the ER. Right before they did a dressing change I looked to the other side of her chest and noticed that the dressing was completely ripped open, obviously allowing for bugs to get into the line. Well that of course was where the smell was coming from, her infection was pretty bad at the point and her fever went to 101.9.
Of course being admitted and started on vancomyocin and some other antibiotic that I can't think of right now her temperatures started to fluctuate. The following day when our favorite doctor came in we checked her site and stated that there could be a possibility that the infection was tunneling under the skin and into the tissues(which is hard to get rid of since there is nothing vascular in the subcutaneous tissues(infections are killed via blood stream). Luckily the infection didn't seem to be tunneling and wasn't tender in going up the track of her central line, but in the worst case scenario the line would have to be removed, which is something we DON'T want. The infection could be from a number of things, the line placement, ripped dressing, internal bug, etc.
As of today, her blood cultures are negative but they drew another blood culture to see for sure. I'm not exactly sure what is going on today since I didn't get to talk to anyone from the hospital, unfortunately I'm stuck 40 miles away at home by myself because of school, and not with my baby girl and my fiancee. I'll be heading down tomorrow, hopefully will know more about what is going on, and hopefully will know a discharge date!
Everything was great for a few days until Sunday morning when I was changing Janessa I noticed her central line site was swollen, pussing, and it felt HOT! I took her temperature at first and it said 99.9, I gave it about an hour to see if maybe she was just hot from being in warm PJs, well that hour later her temperature was 100.4 so we took her down the children's to get it checked out. Janessa had a weird smell coming off her while we were in the ER. Right before they did a dressing change I looked to the other side of her chest and noticed that the dressing was completely ripped open, obviously allowing for bugs to get into the line. Well that of course was where the smell was coming from, her infection was pretty bad at the point and her fever went to 101.9.
Of course being admitted and started on vancomyocin and some other antibiotic that I can't think of right now her temperatures started to fluctuate. The following day when our favorite doctor came in we checked her site and stated that there could be a possibility that the infection was tunneling under the skin and into the tissues(which is hard to get rid of since there is nothing vascular in the subcutaneous tissues(infections are killed via blood stream). Luckily the infection didn't seem to be tunneling and wasn't tender in going up the track of her central line, but in the worst case scenario the line would have to be removed, which is something we DON'T want. The infection could be from a number of things, the line placement, ripped dressing, internal bug, etc.
As of today, her blood cultures are negative but they drew another blood culture to see for sure. I'm not exactly sure what is going on today since I didn't get to talk to anyone from the hospital, unfortunately I'm stuck 40 miles away at home by myself because of school, and not with my baby girl and my fiancee. I'll be heading down tomorrow, hopefully will know more about what is going on, and hopefully will know a discharge date!
Thursday, September 15, 2011
September 15th 2011: It's Been A Month
And not much has happened really, Janessa has had a pretty good month with the exception of her recent oral aversion issues. Janessa originally loved different tastes, textures, and smells but now she doesn't like anything but flavored formula from her straw like sippy cup! We aren't really sure if it's medically related, sensory related, or that she just is too full(which we are leaning towards). Our occupational therapist has been working with us to help improve these recent eating issues she has required, and hopefully we can resolve such issues.
Today Janessa had an ICARE appointment which went okay, she neither gained nor lost any weight, so if next month if there is a re occurrence in this we will have to up her TPN an extra 2 hours to help her hopefully gain weight, but we are hoping that she eventually here will start putting the weight on from eating(if we can get her to eat). Other than that, she looks and is doing well, they changed her formula to pedia sure peptide which is just like pedia sure but with a different type of protein, it helps kids with malabsorption, so hopefully she will tolerate it well.
Janessa vocab has been growing, and she is starting to put words together now, her gibberish conversations are starting to actually sound like English words, we are just waiting until she is actually talking, and hopefully will begin walking here within the next 6 months.
That's really all the updates I have, school has been so busy, I just haven't had the time to update this thing!
Today Janessa had an ICARE appointment which went okay, she neither gained nor lost any weight, so if next month if there is a re occurrence in this we will have to up her TPN an extra 2 hours to help her hopefully gain weight, but we are hoping that she eventually here will start putting the weight on from eating(if we can get her to eat). Other than that, she looks and is doing well, they changed her formula to pedia sure peptide which is just like pedia sure but with a different type of protein, it helps kids with malabsorption, so hopefully she will tolerate it well.
Janessa vocab has been growing, and she is starting to put words together now, her gibberish conversations are starting to actually sound like English words, we are just waiting until she is actually talking, and hopefully will begin walking here within the next 6 months.
That's really all the updates I have, school has been so busy, I just haven't had the time to update this thing!
Monday, August 15, 2011
August 15th 2011: Sticky Sticky Yeast(Still)
So, tomorrow will mark a week since we have been in the hospital, we actually have not been here this long since Janessa was in the NICU! Right now we are at a stand point with the yeast still lingering in Janessa's central line, luckily for us her actual blood stream is clear of yeast, and her echo-cardiogram looked great, but it seems like this yeast just doesn't want to budge from her central line, it is such a sticky bug, and so hard to get rid of that I think the only solution will be to pull the line, and place a new one in. I honestly would hate to see this line go, as most TPN users would agree one only has so much access space for lines, and losing lines is something we don't look forward to, but the yeast just won't budge even with the anti fungal locks.
From my understanding from infectious disease is that if the locks remain in the line for 8 hours a day without TPN, fluids, medicines, etc running through there is a 70% success rate they will work, but for Janessa for some unknown reason hers are only being places for 6 which drops it to a 50% rate(tons of miscommunication here), almost like flipping a coin, unfortunately I think we landed on the wrong side of the coin, and will have to go through with surgery!
Janessa herself is doing wonderful, but you can tell she misses home, and doesn't want to be here anymore. The good news with her, she ate a decent sized meal today and never vomited, became distended(big hard tummy), or grouchy, it seems like she moved the majority of it through her bowels, hopefully it'll remain this way!!
From my understanding from infectious disease is that if the locks remain in the line for 8 hours a day without TPN, fluids, medicines, etc running through there is a 70% success rate they will work, but for Janessa for some unknown reason hers are only being places for 6 which drops it to a 50% rate(tons of miscommunication here), almost like flipping a coin, unfortunately I think we landed on the wrong side of the coin, and will have to go through with surgery!
Janessa herself is doing wonderful, but you can tell she misses home, and doesn't want to be here anymore. The good news with her, she ate a decent sized meal today and never vomited, became distended(big hard tummy), or grouchy, it seems like she moved the majority of it through her bowels, hopefully it'll remain this way!!
Saturday, August 13, 2011
August 13th 2011: Yeast
So we all know what yeast is, it's a fungus, it's found in foods, helps foods rise like bread, but it also contaminates the body, and for kids with central lines like Janessa it can make them very very sick! Well on the day we were suppose to be discharged which was Thursday, Janessa's line culture grew yeast :( her first ever line infection, which would explain why her temperature was 104'F. Yeast is very hard to treat, and has the tendency to grow back, so as soon at that information was found out, vanco a drug used to treat bacterial line infections was stopped and caspo an antifungal replaced it, Janessa also is on antifungal locks which sit in her line for 8 hours to help clear any fungus in her line. From my understanding it's a 50/50 sometimes it clears it sometimes it doesn't, and if it doesn't then the line has to be taken out and a new one must be put in, we are hoping it clears it up, but we won't for sure until Monday, if her cultures are negative Monday then we can go home :).
Another bad thing we found out is that Janessa also is growing the yeast in her bloodstream and not just in her line, that can make kids very sick as well, luckily she is already on an antifungal, and it is keeping it from progressing. So as of now we are just waiting in the hospital hopefully everything will clear up by Monday, if not we may be here an extra week waiting for a new line placement, and negative cultures!! I am glad she is so happy through out all of this, everyone keep her in your thoughts and prayers that she will overcome this infection soon!
Below is Janessa she is a bit puffy from all the fluid.
Another bad thing we found out is that Janessa also is growing the yeast in her bloodstream and not just in her line, that can make kids very sick as well, luckily she is already on an antifungal, and it is keeping it from progressing. So as of now we are just waiting in the hospital hopefully everything will clear up by Monday, if not we may be here an extra week waiting for a new line placement, and negative cultures!! I am glad she is so happy through out all of this, everyone keep her in your thoughts and prayers that she will overcome this infection soon!
Below is Janessa she is a bit puffy from all the fluid.
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