I am slowly moving all the posts from the old server over to this page. But formatting issues as they are, I ask for your patience. Thanks!
The tube is back in. I guess that that is OK. A part of me wanted to be done with it. But she was losing so much bile that her poop had turned white. So they did an ultrasound and there are still pools of bile, must likely caused by "sludge." My poor kid has sludge;-).
We had labs drawn at 7:45. Went to the cafeteria and gave her her meds. Went up to clinic, but the doctors were running late. So we (Natalie and I) practiced walking the halls, and finally got seen around 10. They sent us to ultrasound, and while we were there IR called for us 3 times. Jason got a "little" aggravated, and shared this with the IR docs. I mean we can't be in 2 places at once. We then left ultrasound at noon, on our way to IR.
Then we finally get to IR, Natalie gets a IV put in her foot. She then gets some ketamine and is one HAPPY baby! Around 2 they take her in to put in a new tube. She got a bigger tube and we're hoping to keep this one in place for 6 more weeks.
She woke up in a pretty cranky mood, but she's also teething (in addition to all this tube stuff) so once she had a popsicle she was OK. They tell you not to give anything but clear liquids for a few hours, but she is SO HUNGRY when she comes out of sedation, so once released we went to McDonalds and she ate an entire happy meal. (I wonder where she gets her stubbornness!!!)
No more PTC line (the bile tube in her tummy is now gone)
I went in to wake Natalie up this morning and found her sitting in a pool of bile. I quickly assessed the situation and found her tube (which, before bedtime was inside of her) now next to her. I left Natalie in her bed, she's not too happy about this decision, and call Jason. He calms me. I then scoop up Natalie, change her, and take her down to the kitchen. As I am getting her breakfast ready I page the GI fellow on call at Children's. It';s our old friend Dr. Kohli. Natalie at this point is still not a happy camper; I am not getting her French toast ready as fast as she would like!!!
Dr. Kohli says that he will have our team call us, and advises us to just keep a gauze pad on her tummy to manage the bile flow. Grandpa K(who was to be our babysitter for the day) arrives. A few minutes later, Jason also comes home. Jason and I change Natalie's dressing, which, after 20 minutes, is already full of bile. Dave from Children's calls. I can tell that is happy as he says, "I hear that you are blaming Natalie for taking out her tube! Well congrats!!!" Phew!
Since we were already scheduled for a clinic appointment in Chicago tomorrow, they are just planning on seeing us then. They may need to put in a stitch on her tummy, but since her labs last week were fantastic, they think that this is OK. Double phew!
So Grandpa K (bless his heart, I think he got more than he bargained for) is babysitting and Natalie is napping. What a morning!!!
The FLU or someting like it...
Natalie spent ALL last night up getting sick. We tried our best to keep up with her, using "borrowed" bed pads from the hospital to avoid changing the sheets as often.
She didn't have a fever, and there was some leaking around the bile tube, so we weren't sure if this was a "normal-kid-thing" or not. Since the first thing I always do is call the GI Fellow on call at Children's, I realized that we will NEVER have normal kid things. Because I'll always want to check lab values to first rule out liver stuff.
So that's what I did, I called CMH, and learned that her labs from Thursday look awesome!!!
She is sleeping now, the washing machine is getting a work-out, and I am running on several cans of Diet Coke.
Monkey Walking...Or Am I really that much of a germ-a-phobe!!!
I created this update once already today, but decided to scrap it and start over.
There is nothing, nothing cooler than seeing your kid pick up new things! Natalie has picked up 2 new "feats" that amaze me. 1. Monkey Walking and 2. Sanitizing her hands!!!
We sat in the grass yesterday and Natalie starting crawling around. Only, she decided that she didn't like the way it felt on her knees, so she proceeded to "walk" using her hands and feet all over the yard!!! We'd start at one edge of the yard, she'd crawl to the other edge, I'd pick her up and walk back, and she'd start all over again. We then went inside and she picked up a bottle of Purell (they're all over our house), she taps the top of it on one hand (not realizing that the bottle isn't open) then proceeds to rub her two little hands together. Um, yeah, we clean our hands a lot!
I told Jason about the sanitizing thing and he says, "Yeah, she did that last weekend, but I didn't tell you. I didn't want you to think you'd missed out on something."
In other news, last Thursday's clinic appointment went GREAT! They took out the PICC line in Natalie's arm. Now all that remains is the bile-stint line in her tummy. This will probably stay in place for a few more months. She had to go back on Iron (but she was anemic pre-transplant so we figured this was coming). Here is her list of meds right now:
I went back to work and Papa K got to babysit on Monday! She is doing SUPER great (except for the occasional prednisone mood-swings - but we can handle those)!! We go back to Children's Memorial next week.
Sorry for the delay in updates!
Last Thursday's clinic appointment went GREAT! They took out the PICC line in Natalie's arm. Now all that remains is the bile-stint line in her tummy. This will probably stay in place for a few more months.
I went back to work and Papa K.r got to babysit on Monday!
She had to go back on Iron (but she was anemic pre-transplant so we figured this was coming). Here is her list of meds right now:
She is doing SUPER great (except for the occasional prednisone mood-swings - but we can handle those)!! We go back to Children's Memorial next week.
I am going to take some time to reflect on the miracle that is Natalie. She has overcome so much.
2 days following the transplant, she developed a clot in her hepatic artery. This one complication is alone major, yet more common in living liver donations. And due to the complexity of little Miss Natalie's liver anatomy, her surgeons (who had just done the transplant) did not think that it was reparable. At one point one of her surgeons thought that the best thing to do was to clamp the artery and lose the liver to save her life. Jason (I was still in the hospital) was told that Natalie would be relisted for a new liver - Status 1. Status 1 is given to kids with a life expectancy of 7 days. However, when they went in to operate, they were surprised to find that they could fix the problem.
Then 3 days later she had a MASSIVE bleed. She was given 3 units of blood in an hour. We sat and watched the doctors pushing Albumin into her veins as fast as they could. Nurses and doctors were everywhere. Those 30 minutes seemed like days, never had Jason and I felt so alone, so hopeless. Then they whisked her away. A short while later her surgeon (Dr. Superina) met us in the waiting room. He was scratching his head. They could not figure out where the bleeding was coming from and as they tried to operate - the bleeding stopped.
Following this, Natalie had a few minor cases of rejection and some bile duct issues (caused by damage done to the liver when the hepatic artery clotted). She also developed Rotavirus while we were in the hospital. The road that we've traveled has been bumpy to say the least. But to look at her now - she is a miracle!!!
Recently, perhaps due to the death of the Holy Father. I've begun reexamining my life as a Catholic. Reflecting on the time that I saw the Pope John Paul II in 1993 and reading about Saints. It awed me to learn that Raphael the Archangel, whose feast day (September 29) was the day that I was induced to give birth to Natalie. Raphael is also the patron saint of bodily ills, doctors, nurses, and sick people.
Here is a prayer that I found..
Prayer to Saint Raphael the Archangel
Glorious Archangel Saint Raphael, great prince of the heavenly court, you are illustrious for your gifts of wisdom and grace. You are a guide of those who journey by land or sea or air, consoler of the afflicted, and refuge of sinners. I beg you, assist me in all my needs and in all the sufferings of this life, as once you helped the young Tobias on his travels. Because you are the "medicine of God," I humbly pray you to heal the many infirmities of my soul and the ills that afflict my body. I especially ask of you the favor of healing Natalie of disease and the great grace of purity of prepare me to be the temple of the Holy Spirit. Amen.
Saint Raphael of the glorious seven who stand before the throne of Him who lives and reigns, angel of health, the Lord has filled your hand with balm from heaven to soothe or cure our pains. Heal or cure the victim of disease, and guide our steps when doubtful of our ways.
Natalie got her new swing set last night. I don't think I've ever seen her giggle this much!!!
Last week we went for a walk in our neighborhood and passed the new park. It was full of what looked to be happy kids playing. But at a closer look, I saw runny noses, little coughs, and germs, germs, germs!!! What a germ-a-phobe I've become. So we decided to use part of our tax $ to get Natalie a swing set all her own.
In medical-type news:
We shouldn't have to go back to Chicago until next Thursday. (knock on wood) That is provided that her tube does not leak again (see past journals) between now and then.
Daddy went back to work this week and was honored and awed to find out that many people that he works with donated time off to him while we were in the hospital.
Natalie is turning fearless on me. I guess that this is a good thing, considering how timid she's been. Keeping in mind that she just had a liver transplant 7 short weeks ago, I guess it's amazing that she tried climbing in the fridge today! I had the door opened while arranging last nights grocery items and she tried climbing up the shelves!!!
Biliary drain tube saga:
We have had to replace the tube 4 times now in the last 3 weeks. It's getting a little frustrating. Grrr....
And we had to make the drive (2 hours each way) back to Children's 4 times this week alone.
Wed. - Replace tube. Wed. night tube leaking already.
Thursday - Clinic visit day. While she is no longer on the growth charts (she fell off - but since she was in the 1st percentile we saw it coming) her doctors are pleased with her liver. Her liver numbers look good again. Bili is normal, GGT is good - but with the bile tube leaking (thinking prograf leaked out with some bile), her prograf is too low so we need to get that fixed...
IR can't fit us in, so new tube is scheduled to be placed Friday.
Friday - Drive back to Chicago. Have larger bile tube placed. Natalie does GREAT with sedation and we are outa' there by 11:30am.
Today - Go back to CMH. Natalie's prograf level (immunosuppresant) was too low Thursday. Dose was increased Thursday and we had to go in for a blood draw today.
Again, the site of the biliary drain tube started leaking. We noticed this on Saturday. We have a procedure set up for tomorrow. However, there has been no further leaking since yesterday morning. I'm not sure what that means.
Here's our weekly plan:
Wednesday - Cholangiogram at CMH to look at cause of leaking bile.
Thursday - Return to CMH for clinic appointment
Friday - ? Sorry that's too far ahead to think
In other Natalie news, she's doing GREAT and we really enjoyed our Easter weekend at home. Natalie is going to be getting a new website soon. Once that happens we'll let you all know. Our wonderful friends from MN are helping us with this and we appreciate them so much.
Nothing is ever easy, not that I am complaining too much, since we are home and not in the hospital tonight.
Throughout the past year I have learned patience, without realizing it. This week, never once did I lose my cool.
Here are this week's past events...
Monday - Home health nurse comes late (Prograf is due at 9am) it cannot be given until the nurse draws the blood for labs. The nurse came at 9:15. Prograf is given at 9:30 am.
Tuesday - We notice that the site of the biliary drain tube is leaking. We call Children's (our angel) Dave advises us to attach the bag. He then sets up a procedure for 1st case Wednesday morning. During this procedure they are going to look at the tube placement and if it needs to be changed they will fix it.
Wednesday - It is snowing and we are not going to make it for our 6:30 am arrival time at CMH. Traffic was TERRIBLE. We arrive at 7:35, and still we wait (even though we are the 1st case of the day of IR) (Interventional Radiology). We are told that they are only going to inject die to look at the tube placement. They did not plan on re-positioning the catheter (this is contrary to our plans that were set up). Had we known this we would not have come in...since we have a clinic appointment scheduled for Thursday.
We drive home. Dave, (see above) calls apologizing for IR's mistakes. He sets up another procedure for us with them for Thursday following our clinic appointment.
Thursday (today) - We make the trip in again! The home health nurse comes at 8. Prograf is given on time. We arrive for our clinic appointment and get right in. (What's going on here? Things are working in our favor?) Crap, spoke too soon, IR is running behind, we need to wait an hour and a half for them to get to Natalie. The catheter was replaced and repositioned. We are told that they have reserved a room for us. We told them what we thought - and we are home now! And Natalie is doing GREAT!!!!