Sept 30, 2009

Kelsey's platelet count actually went up just a little yesterday. A big Praise!!!! She has a long way to go but that was a sign in the right direction. They'll test again in the morning and we are praying it continues going up. Her oxygen levels kept going down today while I was there so I didn't get to hold her, but Andy's going there tonight so I hope she's doing better now. We're still waiting and praying she's getting stronger and getting her body better prepared for surgery. She's up to 6 lbs and 10 oz but I'm still worrying that a lot of that is fluid (although, the doctors aren't worried, yet).

I'm feeling a little worst today. Either the pain killers are wearing off or I did to much yesterday...probably both. It's just so hard to take it easy with so much I want to do.

Keeton had a fun day playing with Gran (Andy's mom).

That's all for today. Tomorrow they will do some more test and hopefully we will see positive results.

Patti

Sept 28, 2009

The doctor said everything went well. He said there were lesions on my gallbladder which showed I had been having problems in the past. He said he look around to make sure there wasn't anything else and found nothing. So after I heal, I hope all the pain will be gone. Now, I just need to recover from the pain of the surgery and try to sleep despite the soreness/pain.

Andy said Kelsey was looking good tonight...I missed seeing her today.

Thanks for your continued prayers for all of us.

Patti

Sept 27, 2009

Kelsey is still holding steady. She had a rough night with several brady's (her heart rate drops to low) and had to have an EKG ordered this morning. But, it showed nothing wrong and she did fine all day long. Someone asked to update her weight. Kelsey's up to 6 lbs 4 oz. Some of that is fluid weight but she's definitely getting bigger. The Thompson's came to visit her...here's Tina with sweet Kelsey girl.

Later, that night we had dinner with Aunt Lisa and Uncle JC and Keeton and Daddy took a very short ride on Uncle JC's Vespa scooter. FUN, FUN, FUN. Thanks Aunt Lisa dinner was wonderful!!!

Patti

Sept 26, 2009

Kelsey was looking wonderful today!!! She seemed like she was feeling better and I think it had to do with the meds for her thyroid (but just my option). I'm praying as the days and weeks go by she will be getting better and better just from getting her thyroid levels balanced out. They took her IV out and lowered her oxygen flow down to 3. While I was holding her, she smiled several times. More than I have ever seen her smile. Kelsey met her Aunt Sandy and Uncle Howard today and enjoyed their visit. Also, Daddy and Gran gave her a bath.

Keeton spent the day with his Gran and Aunt Lisa going to the boat show. He had so much fun sailing on a real sail boat.

God blessed us with a good day today!!!

Pictures for the day....

Aunt Sandy, Kelsey and Momma.

Gran holding Kelsey after her bath while they changed her bedding.

Kelsey cuddled up tight for night, night.

Sept 25, 2009

Kelsey had a good day today, nothing really new to report...her platelets aren't going down as fast as they were so that's hopeful. Gran flew in from Greensboro, NC to see Kelsey for the first time and Kelsey was glad to meet her other grandmother in person.

I got my results back and my gallbladder isn't working in the normal range. My doctor said over time I would probably have more and more problems/pains. And if you have had pain from your gallbladder, you know it's not something you want to feel again. So, Monday at 1:00pm it's coming out!!!! The laparoscopic surgery is a day surgery so I will be back home later that afternoon. Please pray all goes well, as with any surgery there's a small chance something can go wrong. I'll be out of it the first 24 hours and then I'll have to take it easy for about a week but hopefully that will be all. I'll miss seeing Kelsey that day but of course I'm glad Daddy and Gran can be with her.

Patti

Sept 24, 2009

They called this morning with some more issues with Kelsey. Kelsey is now hypo-thyroid (about 70% of children with Down syndrome have a problem with their thyroid). When your thyroid is not working it affects all your other systems. So, this is not helping her lungs, heart, liver and digestion system work very well. It also means her surgery will be postponed until it can be corrected with medicine which will take 2 to 3 weeks. Meanwhile, they are still working on her platelets, which seem not to be dropping as fast. But, they don't have any new news with the blood. Her lungs have to much carbon dioxide in them, so they have had to increase her oxygen flow to help push the CD out of her lungs. They have also had to change and add some meds because the meds they were giving her as a diuretic were causing her kidney's to get rid of good things like calcium but keep some bad thing it wasn't suppose to. It was very discouraging this morning when the doctor call for this update but the doctors were very positive because this thyroid thing was something that could be fixed with meds and when fixed will help some of her other systems (fyi-she will have to take a pill for her thyroid the rest of her life but as Andy says that's not a big deal).

So, please add Kelsey's hypo-thyroid to the list to pray for. She can't have open heart surgery until her thyroid and blood are fixed. Also, pray during this time she would start to thrive and not just surive. We want her to gain good weight and not just fluid but it's hard when she is limited in the amount of food/milk she can intake.

Thanks again for your prayers and for taking the time to read this update.

Sept 23, 2009

Late last night, they called to tell us they wanted to postpone Kelsey's surgery schedule for Thursday. The hematologist thinks Kelsey doesn't need to be having any kind of surgery right now. They want to wait and see if they can get her platelets up and hope they can do the open heart surgery to fix everything at one time (instead of doing the PDA first and then the open heart to fix the VSD later). She got more platelets last night and they are going to give her IGIV the next three days and see how she does making/keeping platelets. Her red blood cells are getting low and she might need more whole red blood, too. They are also doing several other tests to see if they can find out what might be happening to her platelets.

She looked good today and did well when Andy and I held her. She always rest and relaxes when we hold her. The last two days I didn't get to hold her because of all the trauma of the transport and then all her new doctors examine her on Tuesday. It was also good for momma to hold her baby girl today, too.

I won't know anything about my CCK test until Friday. I thought she might be having surgery on Thursday, so I didn't make my follow up appointment until Friday.

Please continue to pray Kelsey (1) starts making her own platelets and other blood cells, (2) the pressures in her lungs stay down and (3) she continues to grow health weight (vs. fluid weight).

Thanks for your prayers!!!!



Picture for today....


Nana looking over sweet Kelsey.