WE'RE HOME!

Yes, it's true, we are finally home-and it is great.  Except now I am realizing ALL of the things I need to do since I haven't been home in the past month! Oh well, one day at a time.  The best news is that Mikaela is looking pretty good and actually tolerated the trip home fairly well.  We wouldn't have wanted to go any farther though.

The week in Pittsburgh was filled with meeting lots of doctors and gathering information as well as getting Mikaela's numbers back in check.  First thing we did Tuesday morning was meet with the kidney transplant surgeon-Dr. Shapiro and with Mary the kidney transplant coordinator.  They shared lots information regarding the kidney transplant and crossmatching.
Here are some things we learned...
-Basically, crossmatching is a test of compatibility between a kidney donor and recipient.  It's used to identify the presence of  antibodies that would damage the kidney (cause rejection) from that specific donor. Crossmatching is done several times throughout the transplant process.  They actually put some of Mikaela's blood and the recipient's blood in a petre dish and watch to see if they get along or if the antibodies in Mikaela's blood attack the donor's blood.  (if they fight, it is said to be a positive crossmatch-we want a negative crossmatch)
-The liver is transplanted first because it is not as picky as the kidneys in regards to antibodies.  It is used to taking more abuse and filtering out all the garbage of the body.  The liver should "clean up" the antibodies so, after it is transplated, we will wait a couple of hours for it to do it's "job" then we will put some more blood in the petre dish and try again for a negative crossmatch.  Most of the time it works very well.  Then Mikaela will be taken back into surgery for her kidney transplant.  She will stay asleep the entire time and not know when she is "waiting" for the liver.  There is a slight possibility that the crossmatch will not come back negative and they may need to decide that the kidney transplant will need to be done at a later time when they have a better match.
-Kidney transplant is dependant on finding the best match.  Liver transplant needs a match but it more determined by the "PELD" score.
-They will place her new kidney in the front of her lower abdomen, either on the right or left side.  They will probably just leave her original kidneys where they are.
 
Later Tuesday, we met with infectious disease doctors.  They were called in to decide if Mikaela needed to stay on Vancomycin(antibiotic).  Vanco is hard on kidneys and bones so best not to be used if not really needed and if you are not really sure what "bugs" you are trying to get rid of.  The vanco levels in her body were very high so it was ordered to be stopped and if Mikaela spiked a temp, they would re-evaluate.  We also learned that Mikaela would need several immunizations for post-transplant.  She was able to have her Hepatitis A (another due in 9mos) and meningococcal meningitis vaccines before we left CHP-they have left her thighs pretty darn tender, but at least they are behind us for now.  She will need to have her HPV (Gardasil -3 doses) and pneumococcal vaccine here at our pediatricians office.

We met with the GI attending in charge (Dr. Goyal-she was the dr. who accepted Mikaela to CHP from Burlington).  She looked at Mikaela's belly and worked all week on ways to try and make it feel more comfortable.  There are several things that could be making it irritated so it was a bit of a challenge.  The main thing is that her spleen and liver are just so enlarged that it will be uncomfortable.  She was put on a very low dose of Bentyl for cramping because that can sometimes be the case.  We have used several heating packs as those also help a bit.  They don't use oral fentanyl on 7B (were Mikaela's room was)and they stopped her using morphine as it is hard on the kidney so, they put her on a low dose of dilaudid as needed for pain-which seems to be working ok. By the time we left yesterday, Mikaela still had some times of strong pain-I guess that is just the way it will be until she is able to get her transplants.

Her 4 week course of meropenum is finished and her belly seems to be smaller and softer then it has been- so that is good.  She will start a prophylactic course of Augmentin to try and prevent another episode of colangitis.

Through labs (blood work), it was discovered that Mikaela's phosphorus level had gotten really high.  The good news is phosphorus is 100% controled by diet.  The bad news is, everything Mikaela LOVES (MILK-no cereal, CHEESE-pizza, tortillini, mac & cheese,  and other things were forbidden but milk and cheese were the most difficult to get around)  has phosphorus. She had a couple of days where she was pretty frustrated and a bit hungry.  With this, all meds containing calcium were also stopped.  Calcium and phosphorus bind together and can cause crystals in the tissues.  If left too long big problems can occur.  They can also cause itching!  Maybe lowering the phosphorus level will help with Mikaela's itching.  Since her kidneys are not processing the phosphorus, she is now taking a medicine called renagel which will help rid the body of phosphorus.  Her number is coming down so she is allowed to eat some of the things she likes again - in sm. doses.

The main reason we were in Pittsburgh was to finish our kidney pre-transplant evaluation.  It is very important for all the T's to be crossed and the I's to be dotted when it actually comes time for transplant.  Having met the surgeon, signing papers, talking with the kidney transplant coordinator, drawing certain labs, filling out papers, completing a renal ultrasound (to determine if her kidneys will get to stay or if they will have to be removed at time of transplant-depends on amount of space in her body) and having a discussion with the kidney transplant social worker, we got the news our evaluation is complete and next Thursday they should be able to activate Mikaela on the kidney transplant list.  YIPPY.

It was nice to have mom here for Luke so Mikey was able to come with us to Pittsburgh.  It was nice for him to hear information first hand and ask his questions directly to the doctor.

If we have to leave VT for Mikaela's medical needs, we feel fortunate that we were able to be in such a great facility where the staff is caring, helpful and very knowledgeable.  And our room had a nice view of the city-it was fun to watch it light up as the sun was setting.  Since we had a private room (thank goodness) both Mikey and I were able to stay in the room.  There is a sofa with a trundle that pulls out so we both had a place to sleep.

Wenesday, we were able to leave our unit and go down to the community space and see a collaberation of a local high school for the performing arts (a public school!) and a few college students from a local college do music and songs from Phantom of the Opera.  It was wonderful-full orchestra and 4 singers with beautiful voices.  We had a few visiting therapy dogs-they seemed to be better for Mikey's mental status then Mikaela's.  I think they knew he was missing Shelbie because they headed right for him.  On Friday, they had about 30 tables set up in the community space for patients to go "trick or treat".  Child Life even made sure everyone had a new costume if they wanted one.  Mikaela was all set to get in the shower so we could head down but she fell asleep and missed the whole event.  She woke up to a rm full of little cousins about 3 hours later!  Nichole and the kiddos came up for a visit and brought some much wanted homemade food.  YUMMY!  Mikey and I ate way too much spaghetti and bread but it was so good after a week of hospital food. The kids were very entertaining and a good distraction from what can be a hum drum of a hospital room.  It was great to see them even if it was only for a little bit.

Well, I know there was more but these are the highlights in a nutshell.  I will try to get some pictures from the past mo. posted soon-of course those will probably all need to have Mikaela's approval so it could take a bit.  :)
 
For now, we are going to relax and enjoy this very chilly fall day.