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chronic mama roll call & updates

  1. lizzywiz

    persimmon / 1178 posts

    @Mrs. Tiger: aw man, that sounds like a really crap day. I get this low level buzz of terribleness when we are in situations where she is hurt or scared by a procedure, and to have that on top of hectic, all day 3 ring circus, only to wrap up w/ possible bad news...I'm so sorry.
    I hope the labs aren't indicative of a problem
    @bamblm: well, we are a little different in that we don't have tons of appointments but we're always at the doctor/ hospital anyway. But recently the new pediatrician suggested going back to the ENT and, honestly, due to missing work and money concerns, as well as how much LO hated it before and knowing that she didn't have any abnormalities at the last one, well, I haven't followed up on that appointment. I might this summer, but I was just off 4 days last week w/ her sick and we need a break from Dr.s. And I need to go to work, ha!
    Sometimes I just need things to go smoothly, just for a little bit, and then I can get back on the horse.

  2. brownie

    grapefruit / 4110 posts

    Looks like I will be joining this group. My little man was just confirmed with the genetic marker for Long QT Syndrome which is a heart problem. We have an appointment with a pediatric cardiologist in two weeks to see what this truly means for him and us. But from Google, I think it means beta blockers and careful monitoring.

  3. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @brownie: welcome/sorry to have you! I hope your LO's appt goes well.

  4. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @lizzywiz: they ended up faxing the labs to his GI docs who have changed some of his meds around, and I have to take him in for a blood test next week to see if it helped. His sodium and albumin levels were low... weird since last time his sodium was too high so they decreased the salt. I'm not sure about the albumin or what the heck causes that. So, not totally positive but at least not emergency-negative news.

  5. Ms.Badger

    clementine / 918 posts

    Albumin is the most abundant protein in your blood. It is synthesized by the liver. It's important for transferring other stuff in blood including some nutrients. Was this blood test right after ivig? Because if D had just gotten a large volume of iv fluids his body just may not have had time to catch up. Unless LFTs are high or there is protein in the urine, he may need more calories (you know I'm not a doctor but this is a number I'm used to stressing over)

  6. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms.Badger: please feel free to share your non-professional opinion on these. I don't see an LFT number... When he goes on Tuesday to get labs at the GI docs they pull EVERYTHING so I'm sure they'll check it then if they didn't here. It was after the IVIG but the GI nurse told me it shouldn't affect the Albumin/sodium levels.

  7. Ms.Badger

    clementine / 918 posts

    @Mrs. Tiger: LFTs are AST and ALT and AlkPhos (although I don't really know much about AlkPhos, it was a late marker for us). Liver and kidneys look good, I think L's Drs would have upped his calories and rechecked. I think they would have also done urine protein just to be sure the albumin wasn't being wasted through the kidney. I know it's hard not to worry but these numbers do not suggest liver or kidney problems, which is their main purpose for these tests.

  8. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Ms.Badger: thanks for the sanity check! I know the GI docs will do a urine test as well.

    Side note, I've been able to teach D to pee in a cup

  9. MrsScallop

    persimmon / 1328 posts

    @Mrs. Tiger: thanks so much for the schedules! I will likely do something similar and post it in his room so everyone knows what is going on and when. Also, I am sorry D's IVIG appointment and lab results didn't end up as you'd hoped! Charlie has had low albumin and sodium often, but I think it is primarily due to his dialysis. I hope it is a simple adjustment for you! Charlie had another IVIG infusion recently, so I am sure we will be joining your "fun" too.

    Things have been crazy here. Charlie is labeled as "intermediate status" now and doing really well. There is talk of leaving the hospital in a couple weeks if we can get into a transitional unit closer to home and if his home vent comes in time. While we are so excited to get out of here, the idea of leaving is almost daunting. We still have a lot to learn and get ready, plus a new unit equals a new routine to figure out with DD. DH says his aunt doesn't want to watch her as much as she is for much longer, so we will have to figure something out there.

    I hope everyone's LOs are doing well! I have to say that while I haven't been around much lately, I am so glad to have other chronic illness mamas to chat with!

  10. MamaG

    pomelo / 5298 posts

    @MrsScallop: Good Luck today, just saw your photo on Instagram. I'm so proud of Charlie (and your family). He's looking so grown and is just a beautiful boy!

  11. MrsScallop

    persimmon / 1328 posts

    @MamaG: thank you!! He is settling in nicely and I think the new facility will be great for him. Hopefully it won't bea long stay, but the people seem great so far!

  12. bamblm

    cherry / 211 posts

    So stressed! LO is scheduled for surgery Monday, plus side is they agreed to do her MRI at the same time, so only one anesthesia. On top of that we are moving this week and I have to reapply for her early intervention in our new county.

  13. jhd

    coconut / 8078 posts

    @bamblm: bug hugs, mama! that is a lot to deal with. that's fantastic news that they will be able to do the MRI while she's ready under. can the EI people in your current location help at all with the move?

  14. jhd

    coconut / 8078 posts

    Everything has been going really well over here but we are headed into a busy week of check ups. Today we are traveling for our check up with the surgeon tomorrow am. Just rather overwhelmed with memories as we made this exact same trip a year ago to the day only LO went in the helicopter. He turned 1 at the end of April and his 12 mo appointment went well and so did his visit to the cardiologist so that was great.

    Hope all the other mamas and LOs are doing well!

  15. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @bamblm: good luck tomorrow and with the move! Hope everything goes smoothly.

    @jhd: good luck with your appts! that kind of stuff brings back memories to me too. I remember the first time I drove D to the hospital for a checkup (instead of driving to visit him there) made me cry!

    We're doing ok. Sometimes I think D is getting more words, sometimes I'm not so sure. I'm ready for the "language explosion!" He definitely understands 98% of what we say, which is reassuring.

  16. jhd

    coconut / 8078 posts

    @bamblm: thinking of you & hoping things go well tomorrow!

    @Mrs. Tiger: thanks! I'm ok with the local stuff but the travel + appointments gets hard! Thankfully we are here now and he's getting to play a little. Travel is not as easy with a toddler! That is super exciting to see great receptive language skills. I'm sure the explosion of expressive skills will come soon!

  17. jhd

    coconut / 8078 posts

    @bamblm: thinking of you! How did everything go with surgery and moving?

  18. bamblm

    cherry / 211 posts

    @jhd: Thanks for the good thoughts! The past three weeks have been a little crazy, we are only 1/4 unpacked. The surgery went well, just a very long looooong day. She wasn't done until around 8PM! So scary to see your little one helpless and hurting :(, but she has recovered like a champ. We also had our first visit from early intervention yesterday, so it looks like our new county is way more on the ball than our old one.

  19. bamblm

    cherry / 211 posts

    Question for everyone: How does everyone organize all the medical paperwork? One big binder? I have a folder for bills, insurance and payments, but our developmental peditrician recommended us keeping a copy of her medical records to cut down on all the specialist calling around for records. Anyone have a system to share?

  20. jhd

    coconut / 8078 posts

    @bamblm: I am so glad surgery went well and that your new EI people are doing what you need! Yes, there is nothing worse than seeing your LO go through that kind of stuff. I hope the next few weeks are calmer and less eventful!

  21. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @bamblm: glad surgery went well!

    For organizing paperwork, D has a whole drawer in our file cabinet. I have folders for referrals, insurance payouts, reciepts/bills from medical suppliers & pharmacies, and then separate folders for paperwork from each specialist (early intervention, GI, neuro, pulm, and his regular ped). I also have a folder each for both of his NICU stays. It's a ton to keep track of unfortunately I find lots of folders is easier than cramming everything into a few, even if some of the folders stay pretty sparse.

  22. jhd

    coconut / 8078 posts


    How's everyone doing? Any fun plans for fall?

  23. jhd

    coconut / 8078 posts

    LO is almost 18 months and doing well. We still go to speech weekly. He's signing, but not making much progress with talking yet. Receptive language is good though. We have a sedated ABR coming up in a few weeks, because although he appears to hear us, the speech delay is concerning and he's failed a bunch of hearing screenings. He's getting over a virus of some kind right now, but otherwise has stayed very healthy over the past few months.
    LO loves Daniel Tiger so we're dressing him up as Daniel for Halloween. We had pics done last week in his costume, but I haven't seen them yet!

  24. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @jhd: hey hey hey! Can't believe he's almost 18m!! What signs is he doing? What's ABR? So glad he's been mostly healthy!

    D's doing pretty good. Some progress on speech but not a ton, no explosion yet. I'm trying to make him say what he wants even though he communicates shockingly well using whining, pointing, and a handful of words/signs. He scared the bejezus out of me yesterday with weird poop, but I'm 90% sure it was due to the tiny handful of fruit loops he stole from K earlier. Waiting on docs to reply and confirm that it's no big deal.

    He's going to be Superman for Halloween!

  25. jhd

    coconut / 8078 posts

    @Mrs. Tiger: Aw D will be the cutest little Superman! He is definitely a little super hero! I hope everything is ok after the fruit loops. T has close to 20 signs, but really relies on just a few most of the time. His favorites right now are milk, eat, and bird! No idea where the interest in birds comes from...we don't have one or anything! He lets us know what he wants in other ways too like pointing, taking us over to things, squeaking, whining too. Ms seem to be the only consonant sound he can make and As for vowels. So we have a very clear mama, but no other words or babble yet. But I do love to hear that mama!!!
    The ABR stands for auditory brainstem response. They test to see if the nerves connected to hearing are functioning properly. He had one already not sedated, but after getting a second opinion the docs feel he needs to have the sedated test. He doesn't cooperate with hearing tests in the sound booth and the other tests are all coming back failing. I will be glad to have some answers soon since he failed his first test in December of last year. So it could be his hearing interfering with speech or something else or maybe he just doesn't want to talk yet!

  26. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @jhd: Aw how cute that he likes birds! D mostly signs more, all done, and wheels on the bus haha. Fingers crossed for a smooth ABR, thank you for the explanation! Can't wait until these days are long behind us and we can complain about how they won't stop talking!

  27. jhd

    coconut / 8078 posts

    @Mrs. Tiger: haha YES! My mom tells me all the time we will be telling him to stop talking one day! all done and more are other favorites here too and he made his own sign for beep beep because he is also a car/truck/bus fan! Lol

  28. Thrifty Mama

    cherry / 127 posts

    Hi everyone, new here! It's nice to see there's a whole board dedicated to chronic health conditions. My 14 month old son has external hydrocephalus. At 6 months of age his head went from the 18th percentile to the 80th. By the time he was 8 months old it was in the 99th percentile and growing. We've had ultrasounds and MRI's done to evaluate the growth. His head is still growing. The doctor's are fairly certain he has this condition because of his prematurity (he was 5 weeks early, so not terribly early, but this condition is common in preemies). Because it's external, he doesn't need a shunt, but his head has a "ridge" in the back and his soft spot is very big still. He's developmentally delayed as well (didn't crawl or sit up until 8 months, started crawling at 11 months, and still not walking at 14 months) and he doesn't have much speech. The fluid in his brain is on the outside, not the inside like typical hydrocephalus. It's a wait and see condition. If by 2 the fluid doesn't reabsorb, he will likely need a shunt. That's our story!
    Hope everyone's LO's are doing well!

  29. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @Thrifty Mama: Hello, welcome! As you may have pieced together my DS (D, 2yo) had a brain injury at birth. He's struggled with similar things although of course our situations are quite different. He has maybe 20 words at 2yo, when I think he's supposed to have 50-100. His gross motor got caught up a lot thanks to a lot of PT in his first year. I hope your little man continues to progress! How many doc's appointments do you have to schlep him to?

  30. jhd

    coconut / 8078 posts

    @Thrifty Mama: hi and welcome! just now seeing your post. My LO is 18 months so just a little older than yours.

  31. Thrifty Mama

    cherry / 127 posts

    @jhd: Thank you for the warm welcome!

  32. Thrifty Mama

    cherry / 127 posts

    @Mrs. Tiger: Thank you! My son sees an OT, PT, and speech pathology right now. We have also seen a neuro.

  33. MrsScallop

    persimmon / 1328 posts

    Hi everyone! I haven't been around a lot but I have decided to bump this thread again to see how everyone is doing and get some advice/vent a bit. Charlie has been out of the hospital and in a transitional unit for almost 5 months now, but with no timeline for going home yet. When I think about how he is doing, I am feeling like it is harder and harder to say he is doing well. On one hand, he is super happy most of the time and doing great respiratory wise. He can do upwards of 5 hours off his ventilator a day now with little trouble. But these last few months he has added some new diagnoses to his list (congestive heart failure and failure to thrive) along with some troubling trends with his blood labs (blood albumin has been trending downward each month despite increases in calories/protein) that make me feel like the best I can say about him is that he is okay. Not bad because he has been so happy, but not great. After being able to confidently say he is doing well for a while now, this has been a bit rough mentally for me.

    I hope everyone else is doing well and had a great holiday season. Winter hasn't been going on all that long yet, but I am definitely over it!

  34. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @MrsScallop: hey girl! I'm really sorry that things have gotten tougher for Charlie. I definitely understand the feeling that everything has to be told in a positive light, no matter the news. Sometimes I feel like just having a child with special needs exhausts the good will I get from people in my life, and that I don't get any credit left to talk about things that are additionally tough, if that makes sense. I'm sure no one would tell me this directly, but if I ever try to talk about how things used to be when D was in/out of the hospital, people get very uncomfortable and want to just conclude it with, look how great he is now! even now when people ask when he's getting the g tube out (and I get asked this by different people a few times a month) and I say probably not for a long time, they don't want to talk about it anymore.

    All that to say, I'm sorry. I wish I knew a way to deal with it better. You can talk to me/us! Blogging/letting it all out has been very helpful to me.

  35. MamaG

    pomelo / 5298 posts

    @MrsScallop: hi! I'm sorry to hear a bit of bad news has turned up for Charlie. I can see how it would be a blow emotionally. I'm terribly sorry, and if there is something I can do to help, I will in a heartbeat. I'll be sending prayers up for y'all.

  36. MrsScallop

    persimmon / 1328 posts

    @Mrs. Tiger: @MamaG: thank you so much for the support ladies! I miss being able to come chat with everyone here.

    @Mrs. Tiger: It really is hard to talk to anyone who hasn't been there about those harder parts. I am even feeling that way with Charlie's Facebook page. I have never intended for it to be a blog for me to vent about my own feelings, but I also, strangely, feel a bit uncomfortable putting up any updates that are not even just slightly positive when it isn't an acute situation. I do have this need to have a positive light on everything for my own mental health and maybe to make it less uncomfortable for others so that I can talk about him. But, like I said, the positive is getting harder to find. One day he is going to be worse due to his heart and we will have to figure something out there. He doesn't have a lot of options, so that is hard to think about. He would have more options if he was growing, but he isn't (he has been about 14.5 lbs since the summer), so it is all more complicated.

    Sorry for the long reply/vent! There is a lot going on in my head.

  37. Mrs Green Grass

    pomelo / 5628 posts

    @MrsScallop: if you ever want someone additional to talk to, I have a micropreemie mom friend who is a therapist. She specializes in high risk pregnancy and prematurity, but her son is 3 and still has many challenges. She is so reasonable and thoughtful about things and she's also been there...let me know if you'd like her contact info. I think so much of a parent's mental health is having the right people to talk to and I know it's tough to find.

  38. youboots

    honeydew / 7622 posts

    Hi all. I guess it's time for me to chime in. T was born with different lengths of legs and a twisted foot. We were advised there was not much intervention until she got older. At her nine month appointment we had to hold her down for x-rays. We were referred to a pediatric orthopedist at Shriners after they took a look. The good news is her spine and hips are intact. I'm anxious to her where we go from here.

  39. MrsScallop

    persimmon / 1328 posts

    @youboots: sorry to hear that you are joining the group! I am glad her hips and spine are intact though! I don't know a lot about orthopedics, but I hope you get some answers at your upcoming appointment. The wait for answers and a plan can be so tough!

  40. Mrs. Tiger

    blogger / pomegranate / 3044 posts

    @MrsScallop: I don't think it's strange at all to want to spin things positively. I think people who haven't been there have a really hard time dealing with long, drawn out, ongoing health issues that don't necessarily resolve or improve. I mean, we have a tough time with it because we're directly involved, but even bystanders have trouble with how to process it. I think that this board is a safe space to talk negatively, if you need to.

    To put my money where my mouth is, there were times in D's life that he was suffering SO much, that I wished we had just lost him when he was born. Not that that wouldn't have been heartbreaking and terrible and awful, but it just felt so unfair that he had to go through it all. I have been brave enough to tell a couple of friends that I felt that way, and although they didn't shame me for saying that/feeling that way, I feel like there's a much wider acceptance of all the special needs parents who are like "... but I wouldn't change a thing!!" when there are lots of us who would love to change lots of things if it were in our power.

    So what's the deal with his heart? If it's helpful for you to explain I'd like to know, I am not familiar with cardiac problems (and am not on facebook :)). He's tube fed, correct? Is he having trouble digesting/absorbing food to grow?

    @youboots: welcome/sorry to have you! holding down for x-rays is no fun. Do you anticipate her getting braces of some kind?

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