Friday, January 30, 2009

Good News or Bad News...

That's the call I woke up to this morning from Jordan (he stayed at the hospital with Kenzie last night). Normally, I call him with this phrase and do not like to be on the receiving end of the words. The good news was kenzie woke up with ZERO swelling. The bad news is she had completely stooled out. After the surgery we put Kenzies feeds back on and she couldn't tolerate the higher rate straight into her small intestines, we guess. She pooped literally like 15 times in 24 hours. We had to slow down the rate and she is now back on a 24 hour drip. We are going to very slowly increase her once every 24 hours going forward until we see what her breaking point is.

The other good news is that Kenzie is like a new person. She is SO SO happy again. When she is not swollen its really amazing what she'll do. We should put her under anesthesia everyday if this is the results we get in her therapy. Feeding, OT and ST have gone great for 2 days! They have upped her "bites" from 10 bites a meal to 20. She is starting to really be able to propel the food from the front of her mouth to the back AND she is swallowing without vomiting (a result of not having formula in her belly). Best of all... she's not crying! Tomorrow they are going to try and switch around the variety they give her. Since the pears debacle, Kenzie has only been fed pureed carrots. We are hoping that this time she takes to different tastes better too.

Tracy Brooks came yesterday to visit and brought way too much candy. But Kenzie hammed it up for her and they were dancing on the way to dinner in the back of the car to Britney. Tomorrow Eiee and Grandpa Billy are coming for the day. I'm sure we'll have fun. Then Sunday, Jordan has to leave and won't be back for 2 weeks. It'll suck but hopefully will go quickly.

My goal is to make time Sunday to email back everyone. Sorry for the delay until then. I just get so caught up here.

Wednesday, January 28, 2009

Kenzie's IR Procedure

Image 1: After Surgery in recovery
Image 2 & 3: Before Surgery
Image 3: Last night in the room with Lilly and Chance

Well it's been a long day but a productive one at least! Kenzie had her procedure today. Dr. Haskal first replaced her g-tube for a j-tube which will certainly help with Kenzie's vomiting. All of her formula will now be fed directly into her small intestines. We expect to be able to give all of it over 10 - 12 hours a day which will also free Kenzie from being attached 24/7 which is how shes been for the last month again.

He then did a venogram through the right femoral (the big vein that is in her groin and leads all the way up past her heart)and found that she was extremely narrowed directly above the 2 stents in her jugular vein. Since she already clotted off her Right jugular back in June, her Left side is her only draining vessel from above the chest. The narrowing and the fact that her blood can only flow on her left side is why she was so symptomatic (swollen). So he performed balloon angioplasty and stretched the vein above her stents... it didn't work well so we got the news that Kenzie got yet another stent. Dr. Haskal added a small 3rd stent right above the other 2. He was really happy with the blood flow after that and hopefully Kenzies swelling should subside quickly.

The bad news besides the 3rd stent is that he is fairly confident that at some point this will happen again. He is hopeful though that it won't happen this quickly. As usual kenzie came through everything like a champ. They gave her versaid (spelling?) before she went in which made her totally loopy. She was giggling at nothing which was so funny for us. It also eased her nerves when they started to gas her which made Jordan and I so much more comfortable then when she is just screaming at the start. She was intubated and under general for the surgery which lasted about 2 hours. The University of Maryland Medical Center is really a gorgeous and well run hospital. We really liked it there and felt at ease.

When kenzie came out other than some low blood sugar and fevers she was and is just fine. Her fever is still high but shes been pretty much sleeping all day. She wakes up here and there cranky but managed to give Lilly a huge smile! (not her parents... just her best friend!) I hope and expect that tomorrow she'll be back to her old self.

Tuesday, January 27, 2009

Quick Update

Just a quick update because I've got to be up early for tomorrow. We will be over at University of Maryland Medical Center by 6:15. Kenzie will get some sedatives before they go in with the gas mask to sedate her. They have decided they will have to go with general and intubate her as the doctor might be ballooning her veins and the anaesthesia doctor wants to be prepared should something go wrong. We have decided to take Dr. Haskals advice and are putting in the J Tube. So going forward all of Kenzies formula will bypass her stomach and go straight into her small intestines. We aren't sure how long the whole procedure will take but our hope is to be back at KKI in the afternoon. Ill keep you all posted!

As for her therapies: We switched Kenzie to the spoon for all bites. We now give Kenzie 30 seconds to clear the carrots out of her mouth and if she doesn't the Nuk sweeps her tongue to help her out. Shes been doing decently with it but could be much better. We have also changed her "incentives". We've taken away the constant video and toy and now we throw pop music and a Dr. Seuss book when she swallows her bite. ST and OT are still going horribly and Jordan and I plan to talk to them about changing the way she is dealt with tomorrow. Something needs to be changed as we've been here 3 weeks now and its not working.

Kenzie got her room changed again back to the 3 bed-room. We did that because we got to have her best friends all in 1 room! Its so fun now we have Kenzie, Chance (a 5 yr old boy) and Lilly (an almost 4 year old) all together. They both have said I can show their faces and names on the site so Ill post some pictures of them. Kenzie goes nuts with them and Lilly loves giving Kenzie hugs. Tonight we had storytime with Kenzie on my lap and Chance and Lilly next to me. I swear I think I missed my calling. Maybe I should have been a preschool teacher. Even better is that all 3 kids get into bed at 8pm and sleep through the night!

We had so much fun with Uncle Cousin Markie Boy visiting the last 2 days. Lilly even calls him Markie Boy now too! He introduced us to yumm Potbelly sandwiches and watched Kenzies therapies. Everyone who works here can't believe how many visitors kenzie gets!

Have a good night everyone and Ill let you all know how it goes tomorrow