Jacob's turn...

This week has been all about Jacob. On Sunday morning around 3 am he spiked a really high fever of 104. So, I called our doc on call and he wanted us to bring him into the ER. I retook his temp while I had the doc on the line and it was down so the doc said that I could wait and bring him into a walk-in clinic on Sunday. We did that and it was not a good experience. Needless to say, I will not go to that clinic again. They did a quick strep test that was negetive and sent us on our way tellin me that it was just a virus (my mommy senses were telling me different). Jacob just continued to get worse so I called our doc again on Monday and got him in for an appointment. They too did a strep culture and the quick version was negetive, but the doc felt that he most likely had something not virus related and put him on an antibiotic. Tuesday was not any better so I called again, the doc was afraid that he might have mono, so I took him into clinic for a mono test and a CBC. Later that night we got a call from the clinic saying that the 24 hour strep culture was positive. Wednesday he was still spiking 103 degree temp so I called again and went back to the clinic. Luckily his mono test was negetive. The doc put him on a stronger antibiotic. He has had his two doses today and seemed to be doing much better tonight. So, hopefully he is on the downhill side of this and will get better. I have never seen him so sick. It really worried me...after all we have gone through with Kaelyn our minds tend to think of the worst possible scenario. Luckily this is just a common illness that is very treatable - thank heavens once again.

So, Kaelyn has been very blessed with health this week and with sleeping through the night! I really believe that has been a gift from above so I could concentrate on Jacob and get him through his restless, fever filled nights. Little miracles! (I hope it will continue so maybe I can get a whole nights rest soon!)

Lots of love,

Angie

Cholangiogram and tube placement

Kaelyn went in for her cholangiogram and tube placement on Friday. She did very well. The bile ducts look great! Isn't that good news! She does have a blockage or stricture in the anastamosis (place where the common bile duct is sewed onto the intestines), but this is the scenario that we hoped for. A drain was placed, but was not able to go through the stricture just yet. Her liver had too much swelling to risk trying to go to roughly and push their way through the stricture. So for now the drain is sitting inside her liver draining externally to decompress things in there. It seems to be working. The drain is putting out a lot and Kaelyn's pain is so much less than it was. On November 2 she will go back into the hospital for another cholangiogram and place the drain through the stricture with a balloon dilitation to open it up. Hopefully she will only need the drain for a little bit and when the stricture has opened up and stabilized we can take it out. I was just so happy when the docs came in and said her bile ducts look wonderful. I think that was just the best news we could have ever heard. I was so worried that we were heading into a repeat of the last two years. Thank goodness it's not.

We are now home as of yesterday, and Kaelyn is loving it! Unfortunately Jacob is sick, but he should get better soon.

Love to all!

Angie

Upliftment

Once again my friend whose son, Tanner, had a liver transplant has supplied me with the upliftment that my heart and soul needed. This was on her sons webpage:

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face… You must do the thing you think you cannot do.” --Eleanor Roosevelt

This is all for some purpose, we just cannot see the ending. I sometimes lose focus on what is really important and that is that Kaelyn's soul has gained it's eternal glory in receiving her body. I know that this life is just a glimpse in our eternity and all will be well in the end.

Love,

Angie

Kaelyn in the hospital...

Kaelyn woke up at midnight on Saturday with really bad tummy pain. I tried to get her through the night with tylonal, benadryl and zofran (anti-naseau) meds. It sort of worked, she maybe slept three hours. So in the morning I called the hospital and brought her into the er. She had an ultrasound, and it looks unchanged from the last one she had before we left the hospital after transplant. Still some sludge in her common bile duct and some nacrosis in the left portion of the liver. Her bile ducts are still enlarged, but not any bigger than before. So, after about 7 hours in the ER they finally moved her to a room. She had an ultrasound today to complete the picture of her liver. They want to make sure there are no large fluid collections that may be causing discomfort. The plan is to do a cholangiogram on thursday or friday and see if there is any strictures (blockages) in the bile ducts. This may be causing the leak that is in her liver to not have a chance to heal and it in fact may be getting bigger. Though there is no increase in drainage. If there is evidence of strictures they will put in a bile drain. I know that if it is needed then we need to do it, but part of me screams noooooo. I have a feeling that once we get that drain placed that it will be a very long time, if ever, that it will be removed. Dr. Reyes says that it could be simple and short if the stricture is in an anastamosis (place where her duct is connected to the donors). The drain will just decrease the pressure to the leak and allow it to heal. And then they could go in and place a balloon in the stricture and open it up and hopefully take out the drain. I will place my prayers and hope in that scenario. I should know more about her CT scan tomorrow after rounds and I will try to update so you all know what is going on.

She is not having too much pain today and has had a good time playing inthe playroom and running around dazzling all of the nurses. So things are not too bad. So, just pray for her that she will be comfortable and we can figure out what is going on.

Love to all!

Angie

Clinic appointment

So today Kaelyn had her first outpatient clinic appointment post transplant. All of her numbers look really good. They are lower than they have ever been. This is good. Dr. Healey said that if her numbers keep looking this good for the next month that she is probably out of the woods for bile duct damage. Hopefully they will look good from here on out. There is a chance that the leak in her biliary system could be a sign of narrowing and blockages in the bile ducts. The hope is that the drainage will discontinue and that would mean that the little leak is all healed and the bile is flowing where it is supposed to. If it keeps draining we may need to put a bile drain in. That always seems to be hanging over our heads...but it may not happen. The JP drain she has right now is not really putting out much, so hopefully it will soon just be down to nothing and we can remove it and not worry about anymore bile issues. Time will tell.

Other than the doctor visit Kaelyn has been so happy to be home! It is really just good for body and spirit to be in your own home (for both Kaelyn and I). It is really fun to see her running around again, even if she is still a little wobbly from not using her muscles for 5 weeks. She looks like a new little walker.

Time to gives meds and get everyone to bed, me included.

Angie