Thursday, August 31, 2006

Kennedy update...

Kennedy is still not feeling great... she's slowing way down on her drinking and is still only eating jello, pudding and ice cream and she had a little bit of mashed (more like pureed) potatoes tonight for dinner. The majority of what she WILL drink comes up and out her nose. I talked to her ped about this today and she said we may have to order Kenn another swallow study to see if she may be aspirating even on the thickened liquids... if she is, she wants to talk about a g-tube :(.

She's still in quite a lot of pain... they switched her from codiene to lortab (aka vicodin) and are hoping that will help more with pain control. The codiene was every 4 hours and by hour 3 she was miserable, so hopefully this will work better. She WANTS to eat, but if she swallows anything with any consistency (even apple sauce) she screams. *sigh*

Her ped ran bloodwork and did a chest x-ray yesterday and both came back clear, thank God! So still no reason for her fevers... she said it's possible she has a sinus infection, but if she does, the amoxicillan she is on should get rid of it.

SO the main concern right now is dehydration (again). She only drank about 6oz today and I'm not sure how much of that actually stayed down. I've been trying to fill her up on jello, but she's getting sick of it already. She looks at me like, "You're kidding right?!"

So just keep praying she drinks drinks drinks and that her pain starts subsiding soon!

Monday, August 28, 2006

Kennedy's HOME :o)

Kenn drank about 8oz today which is a good start... I don't know who was more happy to see us leave... Kennedy or the doctors! LOL I failed miserably with the inhaler and getting Kennedy's medical records. They told me to get her records from surgery that I'd have to sit down with her ENT and go over it page by page... have you ever heard anything like that?! I am just not willing to do that. The nurse also told me (off the record) that if Kennedy's ped requests her records there is nothing to stop her from giving me a copy... so that's the route I'll go.

I'm very emotionally drained... I hate that I always have to fight so hard to get her good care... why can't doctors just understand Kennedy the way I do? Not only is she not a "typical" kid, she's not a "typical" kid with Down syndrome either... at least not medically. *sigh*

It's not over with the doctors, I'm going to be calling patient affairs. I just found out my next door neighbor's son who also has Ds has to have his T&A surgery soon... so maybe I can make the doctors behave for them! :lol: I did tell her a few things she should DEMAND before surgery is even scheduled. Live and learn I guess.

Anyway, thanks for your prayers and support... they mean more than you'll ever know!!

Sunday, August 27, 2006

New doctors... new day!

OK so today Kennedy got new doctors... can I say night and day? 3 docs came in today and asked how her night was and mentioned that she had a bad day for eating yesterday... I said, no she's eating, just not drinking. Apparently none of her food intake was recorded yesterday. Whatever.

Anyway, he said, "Well I'm glad she is eating but she can't go home until she drinks." I about fell out of my chair! Hallelujah a voice of reason! I just smiled and said "OK". He turned off her IV but promised if she did not drink today it would be turned back on tonight so there's no risk of dehydration. Ya think?! I didn't know whether to cry or laugh!

Anyway, she also had an amazing nurse today who really confirmed I did the right thing yesterday and said she has never heard of ENT sending kids home until they drink something. She was baffled. She said it was pretty obvious they were all talking about me and trying to get us out of there and kind of joked that they probably feel threatened because I know my kid better than they do. Heaven forbid @@.

The good news is, Kenn drank 3-4oz today. It was slow going, but at least it was something. The doctors are supposed to be coming back up tonight to tell me if we go home or if she needs one more night of IV fluids. I'm really ok either way now that we're through the weekend because I know her Ped will see her every single day if I ask her to. At least I know she has the ability to swallow now!

The hospital administrator came back up too and I asked again about the inhaler and she said the only way Kenn could get a consult with the pulmonology doctors is if ENT ordered it and it's obvious that's not going to happen since the witchy one already told me she wouldn't do it. GRR So I will ask her ped for that too. The admin also told me to follow up with the patient rep office for sure because nothing will be done if I don't file a formal complaint.

Now I just have to deal with her post op appointment. I wish I could take you all with me because facing these jerks again just makes me want to curl up in a little ball. I wish I could bring my nurse from today with me! Or anyone in the respiratory team, they've all been amazing.

Anyway, that's my update... I'll write again, maybe from home.

Saturday, August 26, 2006

Still here...

Well they tried to send Kenn home again today. The ENTs here have just been totally unwilling to listen to my concerns about her not drinking and about her spiking fevers. I finally had to speak to the administrator of the hospital and she said we don't have to leave until I'm ready.

Kennedy is still not drinking anything. I really feel that once she is off IV fluids, she's going to head towards dehydration, fast. They still refuse to run bloodwork to look for a source for her fevers. They are frustrated with me and I am frustrated with them. Thankfully we have good nurses tonight and her respitory therapists have all been wonderful.

I'm going to go ahead and let them send her home tomorrow... the doctors aren't willing to help, so what is the point of being here? I figure if she gets sicker I will take her to our local ER. They'll admit her there if need be.

The Administrator is being very nice and trying to help any way she can, but when the doctors are being rude and refusing to help or even listen, it kind of trumps everyone else. The nurses hands are all tied. *sigh*

Anyway, just pray Kennedy DRINKS, even a little. She took about two sips of milk tonight, not even a tablespoon worth I would say. A few more days and we'll be allowed to give her a straw again and I think that will help.

I'll write tomorrow when we get home.

Thursday, August 24, 2006

Hanging in there... sort of...

Kennedy had a pretty good night... her fever broke and she slept really hard. I was continuing to use the blow by oxygen every time her sats dropped, but the Fellow ENT cut that this morning. She's still in the low 90s and the alarms are going off every ten minutes but they seem to think that's ok... whatever.

Her temp is back up to 103 today. They've taken her off the codiene and are giving her regular tylenol for fever control because she is completely lethargic. She still won't eat or drink anything.

The Fellow said that as soon as she can drink one medicine cup full of fluid every hour they will send her home... over my dead body! Two teaspoons of fluid an hour hardly seems like enough.

They refuse to run blood work to look for any further infection and says the amoxicillan will cover whatever is causing the fever and apparently, they have no problem with sending her home with a 103 temp.

Anyway, I have to get back to her, I just wanted to let you all know what was going on so you can be frustrated with me.

Kennedy update... Please pray.

Kennedy spiked a 104 temp earlier this afternoon and they can't seem to get it down. They still have her on tylenol with codiene but said they can't give her motrin because of risk of bleeding so close to surgery. They are doing yet another chest xray tonight and then a catheter to check for a UTI. Her nurse is wondering if she may have a sinus infection... her nose and throat are full of junk. She ate more jello tonight but still won't drink anything. Pray this fever goes down and/or they figure out what is causing it. I will update again in the morning.

2:00pm CDT
Kennedy had a rough night last night. She had some trouble breathing and her O2 levels were all over the place. They upped her oxygen, suctioned her out, and did a chest x-ray just to make sure she hadn't aspirated. Her lungs are clear, Thank God! Even with pain meds she woke up screaming every 30-45 minutes. It was a long night for both of us.

Finally around 5am she crashed hard for about 3 hours. When she woke up she was able to sit up and took interest in her Signing Time DVDs and her toys. She is now able to cough without crying. which is a VERY good thing! She still won't drink anything, but she has eaten jello and a little bit of pudding. She is off the oxygen now while she is awake but once she goes to sleep her O2 drops again and they have to put her back on. Hopefully they can wean her off of that tomorrow. She still has a low grade temp that they are fighting with amoxicillan, and she is on Codiene every 4 hours for pain. Hopefully she will continue to improve tonight and tomorrow... night time is always bad for her, so send up some extra prayers before bed!

Wednesday, August 23, 2006

Out of surgery...

Kennedy is out of surgery and doing ok... the surgery went really well, totally routine, no surprises! She was in a LOT of pain when we got to recovery so they gave her morphine to keep her comfortable. Her O2 dropped quite a bit... they feel it's due to swelling, so they put her on oxygen and kept her in recovery until she stabilized. She is now in a room in the PICU and they hope to wean her off the oxygen tonight or tomorrow. She's on quite a bit though and when she pulls it off her O2 drops down to the 70s. She is still sleeping for now and Frank is with her, so I thought I would drop by and update. I'll update again either tonight or tomorrow. Thanks for your continued prayers!

Tuesday, August 22, 2006

T&A Surgery tomorrow!

Tomorrow morning Kennedy goes in for surgery. For those of you who keep up with this page, you know the details... for those of you who don't... read the archives sheesh!!! (Kidding, only kidding.) :o)

Kennedy is 2 1/2 and is having her tonsils and adenoids taken out. For a typical child this is a one day in and out procedure. For someone with Kennedy's medical history, things are a little more complicated. She will be in the PICU for 24-48 hours and then in a regular room for 3-7 days afterwards. They are concerned about swelling post op and need to keep a close eye on her.

I'm trying hard not to be nervous... I know, I know, I KNOW that God is in control. I KNOW He's working on those doctors even now, making sure they get a good night's sleep and their minds are clear for tomorrow... but even though my heart knows this, there's still that "what if?" that nags... this is Kennedy's 7th surgery and it just never gets easier.

SO pray for my sweet girl tomorrow... pray that nothing odd happens during surgery, pray that she is not in too much pain afterwards, pray that there is no swelling in the days following surgery, and pray that they DON'T let her go home until she is absolutely safe.

Remember Kassidy and Kameron too... they will be staying at Grandma's house and they'll be busy with school, but I know they are going to miss me and be worried about Kenn.

One of my best friends in the world drove up from Georgia yesterday to be here for Kennedy and for me... she spoiled me today and did a great job keeping my mind off things and I know she is going to be a tremendous support for me tomorrow. Thanks, Amy... it means more than words can say that you are here.

AND for those of you who don't know yet, Frank is home from Iraq! He was not scheduled to be home for a few more weeks yet but they let him come home for this surgery and of course now he can stay. He was there for 11 1/2 months and it's so good to have him home!

I will update here ASAP tomorrow so check there for updates... thanks again for all your prayers!!

Friday, August 11, 2006

More medical stuff...

OK so here's lots more info to digest! LOL The anesthesiologist appointment went ok. At first they were saying they would have to postpone surgery because of her having pneumonia. I told them she is FINE now and surgery is not until the 23rd and she said they usually like to wait longer than that after an illness. I told them if they waited too much longer it would be time for her to get pneumonia again! SO She called someone, not sure who, but they decided to go ahead and keep the surgery scheduled. If she gets sick again between now and then though they are going to postpone. Lovely.

I asked about the MRA and she agreed it was a good idea but she couldn't order it and told me to call her ped back. SO I called her ped (who I just love) and she called back and said she's been looking more into MOYA MOYA and thinks there's a good chance Kennedy has it. She's referring her to a hematologist to rule out any bleeding disorders first and then he'll order the MRA or whatever tests she needs. She called back today and asked if I had heard from them yet (I haven't) and said that it may not be an MRA that they do because of her higher chances of getting leukemia they want to keep radiation at an absolute minimum (which I appreciate!). She promised something would be done before surgery though.

THEN last night her new GI called me, this is the first time I've talked to her since her swallow study. She confirmed that Kennedy is aspirating which I already knew. I told her that even though I'm thickening her liquids she still got pneumonia again and she said to start thickening them MORE and if she gets it again she wants to start talking about a G-tube which goes right into her stomach and she would get no liquids by mouth at all. :( She would HATE that! Because there are no signs of Kennedy refluxing, her GI is saying the fundoplication surgery or reflux meds would not help her. SO PRAY she doesn't get pneumonia again!

The GI went on to say, "Then of course you know she's borderline celiac's disease." Ummm NO! Her old GI told me she does NOT have it. She said "You're right, she DOESN'T have it right now but she's very borderline and if you don't start modifying her diet now she's going to end up with it." SO I am starting to cut wheat, rye and barley out of her diet. Fun!

Monday I go meet with Kennedy's developmental ped. He's been researching MOYA MOYA too and wants to talk to me about it. SO I will update again then, I'm sure!

Kass and Kam both had a great first day of school. They both like their teachers and are making friends fast. Kennedy starts Monday! YAY!

OK guess that's it! Keep praying!

Monday, August 7, 2006

One big update!

Ahhh I am SO sorry it has taken me so long to update! Things have just been crazy here!! We have had an eventful summer! We went down to Chattanooga for the 4th of July, it was a lot of fun! I have lots of pictures I will post soon!

July 20th we went to the NDSC convention. Kennedy and I went last year to the one in Anaheim, CA. This year it was in Atlanta, GA. My mom and all 3 kids went with me and I went as an exhibitor to sell things from my store! I had a lot of help from two of my friends and we did fabulous and had a GREAT time too! I will post pics from that soon as well.

Kassidy starts first grade on Wednesday and Kameron starts pre-Kindergarten next Monday. They are both VERY excited to be going back! Kennedy will start going to a pre-school as well next week. She will go 2 days a week for 2 1/2 hours each day. The center is a mix of typical and special needs kids and they will work with her on her developental and social skills. This is the same school Kameron went to 2 years ago and he did so well there. I'm excited for Kennedy to go!

OK onto the medical crud... we finally got Kennedy into a new GI who actually listened to my concerns! Imagine that?! I told her that Kenn's therapists were concerned she may be aspirating due to her high fevers out of the blue and her constant bouts with pneumonia. (I mentioned this to her LAST GI too but he blew me off.) This GI ordered Kennedy a swallow study for the next day... turns out... she's aspirating! (Surprise, surprise) Fortunately, she is only aspirating thin liquids and not food so for now they told me to thicken her liquids with yogurt. Turns out Kennedy's tummy can't handle yogurt :(. We tried baby cereal which made a terrible mess and then someone turned me on to this wonderful thickening gel! It's called Simply Thick and comes in pre-measured packets... one packet for every 4 oz of liquid. It's tasteless, odorless and not grainy! SO All Kenn's liquids are now a milkshake consistency. She doesn't seem to mind, thank God!

However! Last week Kennedy very rapidly got very sick. She went from totally fine to a high temp and not being able to lift her head up within 2 hours. I took her right to the doctor and sure enough she had Pneumonia... again. So they gave her a shot of rocephin and put her on oral antibiotics and she's bounced back rather quickly. They are assuming she's aspirated again, so I have to talk to her GI about what's next. A PH probe (measures PH levels in the esophagus) and a milk scan (also called a scintiscan) which measures how many times she is refluxing per hour, has been recommended. Ultimately there IS a surgery to correct aspiration, but they are hoping she'll grow out of it first.

Kennedy's Tonsil and Adenoid (T&A) surgery is still on for August 23rd. She will be in the PICU for 1-2 days afterwards and a regular room for 5-7 days after that due to her vascular anomalies and the risk of bleeding.

Speaking of those anomalies! A friend was doing research online about MOYA MOYA which is a stroke disorder. It's VERY VERY VERY rare in typical children (Kennedy's ped didn't even know for sure what it was), and it's VERY rare in kids with Ds... but not as rare as with typical kids. (Still following?) Anyway, the studies my friend found says that vascular anomalies are a HUGE sign of this disorder... Kennedy has 3 that have been found already and her doctors are assuming there are more. There are also some other factors in there that point to the fact that it's possible that Kennedy has MOYA MOYA. Another friend's daughter has it and she had a major stroke a few years ago and lost all feeling in the left side of her body. There is a surgery to correct it, it's brain surgery, but you have to diagnose it first. The way to diagnose is an MRA (like an MRI but a little different... the A stands for Angiography and it's an MRI study of the blood vessels). Kenn's ped said she should absolutely NOT have surgery until this test is done. SO on Thursday we go for pre-op and will be discussing this.

Whew! and here you thought I've been sleeping all summer! LOL Needless to say, please keep Kennedy in your prayers... for all this stuff. Just one big inclusive "Watch over Kennedy, God" is probably easiest... He can figure out the details Himself! ;o) I will update again on Thursday when I know more.