Avery is doing very good. She is so sweet and beautiful. She is laughing, smiling and gooing (baby talk). She melts my heart every time she stares at me. We are so blessed to have two beautiful daughters. Alexa just adores Avery. She is also telling her how much she loves her.
As most of you know Avery had to be admitted into the hospital 1 week ago. She was there for 6 days. One night she was very fussy and I knew something was wrong. Avery is a very calm baby but that night no matter what we did, she would fuss and just seem uncomfortable. The next morning we took Avery to see the Nephrologist, Dr. Kalia. We had taken a sample of her dialysis fluid for them to test to see if she had peritonitis. Peritonitis is an inflammation of the peritoneum, that lines the wall of the stomach. This is where her dialysis catheter was surgically inserted. One of the first signs of peritonitis is cloudy fluid and fever. Her fluid from home was clear but there was stuff floating around in it and she didnít have a fever. Raul, the nurses and doctor all seemed to think Avery look fine but I didn't, I knew something just wasnĎt right with my baby. She had this look of pain in her eyes. She also looked so tired and worn out. They drew blood from her tiny veins and flushed her with fresh dialysis fluid to see if her fluid was cloudy. Well the fluid was in deed cloudy. You have peritonitis when you have 100 or more white blood cells. One of the nurses checked the lab results and they said she had 272 white blood cells from the culture we brought from home. At that point I started crying and getting very worried. Peritonitis is treatable by infusing strong antibiotics through her dialysis catheter. It also can be life threatening depending on the type of bug that is inside. All I kept doing is asking myself, "why". Why Avery? Why can't I be going through this and not her. Why does this sweet baby have to go through pain and discomfort. Itís not fair. Then I didnít understand because we are so clean and feel we do everything the right way in order to prevent peritonitis. The nurses say we can do everything right and it can still happen, I think they were just trying to make us feel better. I just kept crying and crying. Raul later told me that Averyís sweet nurses, Jeanene and Jeannie were also crying too. Avery was admitted and put in a room. It was so sad and depressing, we had been home for almost two months and I didnít want to be back in there. I didnít want to see different floor nurses coming in all hours of the day and night to pull blood from her veins. I know it is something that has to be done but I didnít like it at all. I didnít want my poor baby to be in pain from the peritonitis but also in pain from nurses sticking her 3-4 times every time they needed to draw blood. To top that Avery was constipated. She hadnít pooed in over 4 days so they were sticking all kinds of enemas and other things inside of her to try to make her go to the restroom. We later found out that the dialysis fluid sample they got from Avery when we went up there was super high in white blood cells, 2700. Can you believe that? I couldnít. It happens so fast, in just a matter of hours it went from 272 to 2700. We caught it early.
Shortly after we were in our private room (our VIP room, it is a huge room with our own restroom and leather couch, it was comfortable) Avery had a strong dose of antibiotics sitting inside of her peritoneum for 6 hours and then they started her on a 24 hour dialysis treatment. Averyís dialysis nurse, Jeanene had to leave so we were fortunate enough to have Jeannie help her. I was a little sad to see Jeanene leave early because she knows Avery and us more than anyone up there. But I donít think I would have gotten through this unexpected crisis without Jeannie by our side. She honestly loves Avery and doesnít treat her like a patient. She is so sweet to Avery and to us. She is so encouraging and honest. The best thing is she is super funny. When Jeannie walked in the room, I didnít have time to be upset and sad because she was constantly making me laugh. Laughter is the best medicine for me. Avery did good after she started on her antibiotics. She was very calm and comfortable.
The next night we had to leave our room and go into another room on a different floor because there wasnĎt enough patients on the floor we were on. The room was awful and dirty and small. Well everything turned for the worse that night. Avery was hurting so bad. She was screaming and was in so much pain. She would scream so hard that she would turn purple. I have never seen Avery like this before. The doctors came in and said she might have gas pains but Iím sorry it was more than gas pains. Raul and I would take turns holding her all night while the other one just sat there trying to figure out what was going on. We tried everythingÖ. rocking her, singing, walking around, wrapping her, unwrapping her, changing her diaper and clothes, laying her in the crib or swing or even carseat. Nothing would work, she would be calm and sleep for 10 minutes at the most and all of a sudden start crying and screaming. Doctors and nurses kept coming into the room but no one knew what was wrong. At that point I couldnít stop crying either. That is the worst feeling in the world, when your baby is in so much pain and there is nothing you can do to help her. They called Dr. Kalia at home and he ordered immediate blood work. They finally came to the room at 6:00 am and took Avery for blood work and to insert an IV in her arm. Dr. Kalia was there by 6:30 examining Avery. The results from her blood work came in and we found out that the UTMB hospital pharmacy was not diluting her Phosphorus that goes into her feedings. The phosphorus should have been diluted with 190 ml. of water and then give her 5 ml. of the combination. Well they were giving Avery the full 5 ml of straight phosphorus. All of the bottle of phosphorus at home there is clear warning of how deadly phosphorus is on infants. When she came into the hospital her phosphorus level was 2.7 and now it was sitting at a whopping 14. The normal level is between 5-8. I was and still am so mad. How come the pharmacy didnít read the doctors orders correctly? They ďassumedĒ the nurses were going to dilute it. But on her iron she was getting it said, ďNo further diluting neededĒ. Why didnít they put it needed diluting on her phosphorus? How come the nurse (the floor nurses, not the dialysis nurse) didnít confirm it was the right prescription? Their mistake lead a 2 month old baby with kidney failure to be in more pain than she had to be. Avery went through all of this because of them. Dr. Kalia was very upset and tried to talk to me and calm me down. But I couldnít stop crying, I didnít understand how this could of happened. We are in a hospital they shouldnít make theses kind of mistakes. They should be more careful. Well Avery had to be admitted into the Pediatric Intensive Care Unit. She had to be watched very closely until her phosphorus level went down. She was in the PICU for 2 nights and the final night she had her own room again. It was the most awful experience.
If it wasnít for Dr. Kalia and his nurses we wouldnít take Avery to UTMB. The ONLY reason Avery is still going to that hospital is because of her wonderful kidney doctor. He has such a big heart and truly cares for Avery. Iím telling you Iíve never met a group of nurses and doctors who cared so much for such an innocent child. We are so grateful these amazing and wonderful people have come into our lives to care for our little miracle, Avery. She is a fighter, our little champ!! She has truly touched their hearts.
Avery has reached 9 pounds!!! Ever since the doctors changed her feedings she has done really good. She is eating a lot more, more active and alert. She has not had her feeding tube in for over a week!!! That is the main changes. She is so beautiful and sweet, you'd never know she is a sick baby.
Today Avery and I went to UTMB to do her weekly blood work. She is doing good and the doctors are happy with her weight gain and dialysis. She is retaining a lot of fluid but they said it is fine because she is urinating a lot. They don't want to decrease her dialysis fill volume because if she gets dry she could lose the little kidney function she has left. She does urinate, she just doesn't urinate the waste in her blood. Her blood work was ok but her calcium and magnesium was high so they took that out of her daily feeds. I was concerned with Avery's eating lately. For some reason she didn't want to eat and she was sleeping a lot more. At the beginning of last week she was eating 2.5 ounces and sometimes wanting more plus little missy was awake and alert for a good 4 hours during the day. This week she doesn't even drink a whole ounce and she is always asleep, she might be awake 1 hour during the day but it's in spurts. I thought it was because they changed up her feedings which was making her full or the milk not tasting good. Today the doctors and dietician again changed her milk supplements so hopefully she will tolerate her feedings better. It just seems like every week we are changing something, which is fine because we are going down on medications and supplements. Thank you for your continued prayers.
Well I had to put Avery's feeding tube back in tonight. For some reason she didn't eat well today so I'd rather put the tube back in so I know that she is getting the right amount of food. Plus in her feedings, we have to add Sodium Chloride, Magnesium Oxcide, Calcium, Phosphraus, Protein and Carbohydrate Supplements so it is very important that she has the right amount every day. Avery went on her first road trip this past weekend. We went to Brownsville, Raul was in a wedding. She did very good. We had to take all of her dialysis equipment, supplies and medications. We have another follow up for more blood work on Friday. Last week her potasium was a little on the high side so they increased her dialysis, hopefully her lab results will be better this week. She weighs 8 pounds!!