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Kayli's Blog I intend to update this area as often as I'm able, but we are having a ton of things coming down on us right now, since we didn't have insurance when Kayli was born. David's insurance was due to start this past week... had they not decided to lay him off first. Between that, fighting for unemployment where no unemployment office exists, lack of income, and his never-ending child support issues, we are both overloaded and very short-fused. Please be patient if I don't get updates on right away. 1-1, 1am Kayli has now been home two weeks and whew am I tired! She eats very well, about 3-5 ounces per feeding, and now weighs 8 pounds. I figure she would weigh even more now except that she is extremely active. She is meeting normal milestones very rapidly, and at 7 weeks old, has already met some of those considered advanced for 3 months. To look at her today, you would never know that she almost died a few short weeks ago, or that she spent almost her whole life in the hospital. She does still get over-stimulated fairly easily, such as during family gatherings with lots of new things to see and too many loud noises. Then, she is jittery and anxious... a fairly obvious throw-back from being so medicated for so long. This is also when I see her fist her hands and pull her arms in close again - something the hospital said was a result of brain damage and not simple defensiveness. She only holds this position now when she is uptight in some way. Otherwise, she is too busy pulling my hair :) 12-21, 6am Well the hospital policies for release made it
take 3 hours to get Kayli out (although this didn't include the
occupational therapy information we were supposed to need for her
increased muscle tone, for some reason), but we did finally get out
of there around 6pm Wednesday. We then took our first car
ride, which initially seemed to hold Kayli in thrall, then put her
straight to sleep as it does all babies. As soon as we got her
inside and back out of her snowsuit, she was awake and ready to take
in her new surroundings. As she had eaten so much while still
at the hospital, it was something of a surprise that she would
immediately be ready to eat again. Oh yes, I remember this
part from years ago... this is where mom just sits down to eat and
baby is suddenly hungry :) 12-18, 11pm The MRI scheduled today never took place. It was rescheduled several times, but there were no openings. David found out that the sedation they intended to use can cause respiratory problems, too, so they may have decided it wasn't worth attempting, when he told them in no uncertain terms they could not use it. She also had her hearing test... while sound asleep. This is her second test and she failed this one, as well. I'm afraid I just don't put any weight into a test that is done while the baby is sound asleep and drugged up on top of that. The MRI won't be rescheduled (unless it's as an outpatient sometime in the future), so the plan is now to just bring our baby home tomorrow. YAY! 12-17, 1am Kayli is eating between 2 and 3 ounces per feeding now and has gained an ounce or two back from what she lost when the TPN and lipids were stopped on Friday. She is now off all IV sedation and pain medication, though she was placed on oral Ativan (an anti-anxiety drug). She is still expected to come home soon... we are hoping Tuesday after her MRI (since it is prognostic and not diagnostic) and should therefore not effect her release in any way. 12-15, 1pm Kayli is eating to goal, just as I knew she would if given adequate time woohoo! Her new doc just did rounds and said to feed her as much as she wants now. Her kidney function, I was just told, is perfectly normal now, too. If you recall, I said that would happen as soon as she was eating as she should (which got me scoffed at since everything is always still about the initial oxygen deprivation and therefore can't have an easier or even just a different explanation.) Isn't it amazing what a little patience and a lot of prayers and belief can make? Let's keep this faith machine going! She still needs to continue to eat at goal consistently and start gaining weight. She is also still being withdrawn from sedation and will need a lot of comfort and support to get through that without any setbacks. 12-15, 1am We had been told at our family meeting that Kayli would be given time to get to her feeding goal before they would want to insert an NG tube, but today, they were already ready to put one in. I called and let them know that I did NOT give consent and wanted her to have more time to allow her very un-used tummy to adjust and her body to adjust to the drug withdrawals. Well I am pleased to announce that I'm being proven right, as she took 70ccs at her 9pm feed and 50ccs at her midnight feed. Her ultimate goal is to consume just over 2oz every 3 hours, so I'm asking everyone to focus on this for her (she has to keep it down, too!). We do NOT want them forcing an NG tube into our baby, just to speed things along, and do NOT give our consent for this to occur. But, this hospital has consistently done what they wished even when we were against it, so please join with us that they cannot say that they have any [medically necessary] reason to do so. 12-14, 1pm Kayli had a fairly rough night last night from our standards, as she has always been the least fussy baby in her unit. This all seemed to change around her 9pm feeding. She didn't really seem all that interested in eating, and then became extremely upset after her 9pm meds. She attempted to scream the house down for a good 30 minutes - something neither daddy nor I have ever seen from her. She also spit up a good portion of her feed and was even madder. Dad insisted a doctor come see her when she just would not calm down. The doctor examined her and then swaddled her and gave her the pacifier, saying she was reacting to the sedation withdrawal. She hasn't taken her full feedings since then, except for once (I think her 6am feed) and they are again talking about giving her an NG tube, as they had discontinued her TPN (IV nutrition) sometime during the night shift. Since she is withdrawing off of sedation at the same time, dad had stated last night to NOT take her off TPN and give her a little extra time with the feeds... I guess this was ignored. It sure makes more sense to me to give her a couple of extra days to get used to feeding, as she never really has fed beyond what she is supposed to get right now, and her tummy needs time to stretch. 12-13, 1pm Kayli continues to take her bottle feedings very well and they continue to increase the amount she's given every third feeding. She is doing well as they wean her down off the sedation medication...not showing any signs of distress or withdrawals. The MRI may not be rescheduled until sometime next week, but they are hopeful she will be home by the end of next week (so are we!). 12-12, 11pm Today was positively exhausting. We spent most of the afternoon and evening at the hospital, as we had our family meeting with the doctors in charge of Kayli's care at 3pm. We were told that her goals for release are to be able to eat a little over 2oz every 3hrs and to completely wean off sedation, if possible. She doesn't seem to have a problem drinking from a bottle, but we aren't too successful yet with nursing (nursing isn't required for her to come home). They stated that she can go home on an oral version of the sedation if she has come down enough (and everything else looks good). Her kidney function is improving, though still not considered normal. She failed the hearing test for both ears that she was given I guess sometime last week. They wish to do a follow up on that. They also stated that what the CF nurse said about the genetics test being definitive is incorrect, and suggest we follow up on that. They will be scheduling a brain MRI to see what damage was sustained during her birth injury. They had already scheduled it for today, but we cancelled it. However, daddy wants it done so it should be done within the next couple of days. Kayli is also scheduled to begin work with an occupational therapist for increased tone, primarily in her arms and hands (she keeps her arms bent with both hands close to her face and both hands fisted). The OT will be teaching us how to continue to work with her at home. 12-12, 1am I seemed to have cut and pasted badly earlier, so if anyone was confused or thought I hadn't updated, I apologize. Kayli took her first feed fine. The nurse said it took her about 30 seconds. Of course, she was put all the way back at the beginning point again at 5ccs, so I guess it wouldn't take long to suck that down. But, at least they have absolutely no reason to claim there is a need for an NG tube, so I'm very happy about that. 12-11, 5pm We have been told that Kayli's feedings are being restarted at midnight tonight. However, if we want to prevent her from having an NG tube again, either she has to immediately take to the bottle herself, or we would have to be present at the time to prevent it (at midnight!). And, as David put it, even if we are there at midnight and get her to feed okay then, what is to stop them from saying she "failed to nipple" on the next feeding, or the one after that, or the one after that? There is only one nurse, after all, and more than one baby on the same feeding schedule. This has me very upset as any tube insertion can cause some injury as well as introducing bacteria/infection. I do NOT want to get on that roller coaster again! 12-11, 2pm We have some good news today, although it comes with still more aggravations and stress. The genetics test I was told a very long time ago that the hospital ran due to her newborn prescreen, which was abnormal for Cystic Fibrosis, was completely negative. I spoke with someone in the CF department, who explained there was no gene mutation whatsoever, meaning Kayli does not have OR carry it. It was further explained that the marker they use on newborn screens, called IRTs (immunoreactive trypsinogen), is often elevated in babies who have had traumatic births. So this is a very good thing, obviously, but it is downright cruel that this information wasn't given to us, even though it's been available for some time now. The only reason I found out at all was because I received a call from the CF department to schedule still another follow-up test, and said I wanted some questions answered first. Another thing I found out that was oddly missing from Kayli's file was any record of an official Nephrology (the study and treatment of kidney diseases and disorders) consult. Now one would truly think that after all of this time of Kayli being considered to be in kidney failure that a Nephrologist would have been called in. To me, this is gross negligence on the part of the hospital and the doctor(s) in charge of her care. If the protocols for any abnormality aren't showing improvement within a reasonable amount of time, or if there is a serious problem or disease, a specialist in that area is usually consulted. Why has this not been done for my daughter in the highest-ranking hospital for children in Michigan??? 12-10, 10pm Kayli's fluids are being altered again. Instead of increased TPN, they are increasing glucose (they seem to think she's getting too much protein so they are giving her more sugar water). Her antibiotics schedule doesn't follow what I was told, as I mentioned. This means the NPO (nothing by mouth) order isn't to be lifted until Wed. Ten days is ten days as far as I'm concerned, which would have been today if they had been telling the truth about when they initiated this protocol they wanted to call social services on me about... because it was too important to interrupt (even though the protocol is to IMMEDIATELY start antibiotics, not wait a day or two). They also elected to schedule the "definitive" test for cystic fibrosis for the 19th, which will just delay her release even longer. I'm sure they won't be so eager to continue to keep her there if I inform the medicaid case worker how many tests I refused or that I feel were unnecessary. I sure as heck have no intention of paying for any extended "bed time" just so that medicaid can be milked for all the dollars this hospital can get... 12-9, 2pm Just got the update from the day nurse, who read Kayli's chart to determine when the NPO and Vanco were to be discontinued. What she read does NOT match what I was told by the doctor who had been taking care of her, nor by the doctor who is currently taking care of her. I was originally told on Nov. 30th that they suspected NEC and put her on bowel rest and the Vanco. At that time, I wasn't told it was a ten-day bowel rest, but that they were waiting for tests (abdominal x-ray and blood cultures). However, it wasn't until Dec. 4th that they actually came out and said it was a ten-day bowel rest, even though bowel rest was started Nov. 30th, and her charts indicate this is day 8! Now I am no mathematician, but this isn't accurate ...either they cannot correctly document what they are doing, they have a serious problem with not telling the truth about what they are doing, or they cannot count to ten. I guess I'm going to have to let them call social services, as this is not going to be continued yet another 2-3 days just because they feel like it (or can't count, correctly document, etc.). She is staying well-saturated without the oxygen support and they have stopped giving her plain sodium IV solution to replace her high urine output and switched that to additional TPN (the IV nutrition solution). 12-9, 12am Well I now have a pretty good idea why no one gets information. There are 4 babies to 1 nurse in Kayli's unit. While David and I sat there at shift change, one baby's oxy monitor went off for 45 minutes, while another baby cried almost that entire time. (Nurses have to do a shift change review with each other, so the new nurse knows precisely what is going on with each baby, so there was literally no one to address this.) So the problem with getting information (especially at certain times of the day/night) is that they do not have the time to read the computer information... or barely anything else, from what I saw. But, I did call back after the nurse finished the first wave and before the second began, so I could have gotten more information, if it had been logged into the computer. What I do have to report is that Kayli's urine output is STILL too high... it needs to come down to what is normal for her weight. She also came off the oxygen altogether tonight, after we left, and is weaning on the versid (same total dose, but spread out further). She looks very good... seems to be the least fussy baby in the unit and will probably be even more of an angel, once this ridiculous NPO order ends on Monday. She was so hungry, poor little thing! |