Avery UPDATES

 

Most of Avery's updates and entries are written by her mother, Marissa.

Home Sweet Home for Raul.... 2006-10-16 16:19:21.0

Raul was discharged to go home.  He is doing good, of course he's still sore but it is getting better.

Avery's creatine continues to go lower.  By the end of the day her creatine was 0.19 which is great.  I did get to hold her today.  We watched a movie but it was hard for her.  It was the first time for her to be out of bed so she was whining and moaning the entire time.  She was also crying because she really wanted her daddy but Raul couldn't hold her because of his surgery pains.  She kept putting her arms out to him.  It was sad and brought us all too tears.

She is having to stay another night in PICU because of her abdomen issues.  She still has an NG tube in.  Other than that she is doing good.  I can't wait until the pain lessens for her.  I feel so bad.  I think she is more frustrated, uncomfortable and scared.  They are hoping to get her in a room tomorrow.

Since Raul was discharged I didn't have a room to sleep in.  I took Raul home tonight so I can help him and spend time with Alexa.  Alexa is doing good and she's enjoyed spending time with both of our families while we've been here but she misses us and misses her baby sister a lot.

Good Day 2006-10-15 10:56:48.0

Raul had a good day.  No fever.  He's up walking and eating.  You can tell a big difference from Saturday.

Avery is good and is recovery from the surgeries.  She is in a lot of pain.  She was able to drink her bottle.  First she had Cherry Pedialite and then had 4 oz. of formula.  Her abdomen became very big and swollen again.  They put down an NG tube (through her nose) and sucked out 200 cc's of acid and other stuff out of stomach.  They also gave her stool softner. This did make her belly a little better.  She had another ultrasound and they found little fluid around her new kidney.

Even though she is in pain the doctors want her to move around more. 

Her kidney is doing wonderful, her creatine was 0.24 at 11:00 pm!!!!!

Wow, what a day! 2006-10-14 22:54:41.0

This has been a busy day but I'll try to sum this up the best I can.

Raul was doing great all day until this evening.  He was taken off the morphin because he was still feeling very sick.  He is now given pain medication by mouth. He is able to eat and can walk around, he was looking really good.  He did make it to see Avery twice.  However, sadly this evening Raul started running a fever and the pain intensified.  He will be in the hospital at least until Monday unless the pain and fever does not decrease.  Say a prayer for our hero, Raul!!!

Great news on Avery, she has no fever and her potassium is significantly lower.  She has good urine output.  She had 2 more blood transfusions.  But the most important thing to look for with new transplants is the Creatine level in her blood.  The lower the Creatine the better and it's a sign that her new kidney is working.  Dr. Kalia (Retired Nephrologist that we love works one week a month and it so happened to be the week of Avery's transplant) and Dr. Thomas (another great Pediatric Transplant Surgeon) visited with Raul and I this morning and they said they were happy with the overnight progress that Avery made.  Her first blood labs after the transplant indicated that her Creatine level was 2.5, during the middle of the night it was 1.99 and by 9:00 am it was 1.70.  The trend shows the level is going down which is a great indication that her kidney was working.  Dr. Kalia was pleased and felt very good about this.  He said her Creatine level is already better than it was when she was on Dialysis!!!!!!   The ideal Creatine level is under 1.0. 

Avery continues to be in a lot of pain and has a lot of gas which is also discomforting.  She is mostly sedated with pain medication.  She was doing great during the day and her Creatine level dropped to 1.48 during the afternoon.

This afternoon Avery had an ultrasound and it showed that there was excessive fluid in her abdomen.  The abdomen was ascended and very hard.  It bothered Avery because even though she was sedated she would rub and pat her belly (poor baby). 

Surgeons didn't want to take any chance so she went back into the operating room at 7:00 pm.  She was in surgery for over 2 hours and Dr. Thomas came up and told me that he removed 300cc's of blood (that’s a lot).  After the transplant on Friday Avery was given heporin which is a blood thinner and helps prevent clogging in the new kidney.  Well the heporin thinned out the clots from the surgery causing it to slowly start leaking. 

Avery is back in PICU and she is in stable condition.  She is moaning a lot and she's in a lot more pain.  She was doing great other than the excessive fluid in the abdomen.  Dr. Thomas said this is common with transplant surgeries.  Please keep Avery in your prayers! 

I'll try my hardest to update again on Sunday.  Aren't you all so proud how well I've done updating, lol.  As stressed out and tired as I am... I know how many supporters and prayers are out there.  I know you all care so much about our family so I want to keep you all updated as much as possible. 

Again, thanks for the outpouring love and support you have show the Montalvo family.  xoxo, Marissa

 Creatine Levels for October 14th:

 2.5 > 1.99 > 1.70 > 1.48 > 1.30 > 1.05

(looking GREAT)

Transplant Update 2006-10-13 23:05:30.0

After 4 hours of surgery, Raul came out doing well.  The surgeon said everything went just as planned and he did excellent and had no complications.  When I saw Raul in the Recovery Room is was in a lot of pain and felt very sick to his stomach.  He was given plenty of medication and has a morphin push button for more pain relief.

Avery was in surgery for over 7 long hours.  They put in a main central line and the first one didn't work, the second slipped out of place so they had to place it in a third time and it finally work.  The central line is for medication and to draw blood so they do not have to keep poking her.

Once they had Raul's kidney inside Avery, they had to keep repositioning it because it wasn't staying pink, it was turning purple.  The surgeons were concerned and had an ultrasound and another scan to check to blood flow.  They kidney is working and has good blood flow.  However, the new kidney is not producing urine like expected.  They say that sometimes the new kidney is in shock from leaving the donor.  The kidney was use to Raul's bigger body and higher blood pressure.  It is prayed upon, hoped for and expected to start functioning properly.  It can take several days, weeks, months or may never work.  So we are praying and hoping that God will make this work for Avery.

Avery is in PICU and she is very uncomfortable and in a lot of pain.  She is running a high fever and her potassium is too high.  She also had to have another blood transfusion (she had one while in surgery)  She is being treated properly for this and under constant blood work and doctor supervision.  PLEASE say a prayer! 

Raul is doing VERY well.  He has mainly been out of it all day but is speaking more to me this evening.  He is in minor pain and discomfort.  He is still feeling a little sick but is also being treated with medication.

Thanks again for the prayers and concern for our family.  This is very hard for me right now but I have faith in our Great God Above!!!! 

The Ramirez family sent this message which is very inspirational:

"Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Proverbs 3:5-6

 

Admitted 2006-10-12 20:45:18.0

Raul and Avery were admitted into UTMB this morning.  As soon as we got here Raul and Avery had to give a lot of blood.  The final test before the transplant is the Cross Match with both of their blood.  Around 6:00 pm we got the results and everything was good so the transplant is for sure on for 7:00 am.

Avery is doing well.  She is like a little celebrity at UTMB and always has many staff visiting her and keeping her company.  Three clowns came by this evening to play and they made her a flower balloon.  She really loved it.  I'll post pictures later.

Raul is bored and hungry.  He hasn't been able to eat since Wednesday night and he's all alone in the other hospital.  I feel bad for him.  Rema came by to visit and shower us with love, yummy food and gifts.  She is always great company for me, she stayed with Avery for a few minutes so I can go to check on Raul. 

I'll post Friday afternoon and let you know how the transplant went.  It begins at 7am and is not expected to end until around noon.  We also found out that the surgeons will be taping Avery's transplant and they are putting it on DVD for us.

Prayers!!!!!! xoxoxoxo