Trying Times: Ava's Kidney Update - Part 4

(If you are just now learning about Ava's kidney condition and want filled in more, here's Part 1, Part 2, and Part 3).

The day we have mentally and emotionally been preparing ourselves for has finally come and gone, and I can admit that it is such a relief to have it all behind us. With that being said, I will fill you in with what went on the day of her surgery up until now....

On Monday, January 30, 2012 we (including my parents, bless their hearts) loaded ourselves and our luggage into our vehicles and drove for several hours north until finally reaching our destination at UPMC Children's Hospital of Pittsburgh, Pennsylvania. We arrived almost exactly on time for her registration, which was lucky for us considering all the travel delays along the way. Once the registration process was complete, Ava was then called back to have her vitals measured and for a change of clothes. We were then put into a separate waiting area, where she could play intermittently in between different medical consults (i.e. with the surgeon, the anesthesiologist, etc). Below are a few shots we took while waiting for her surgery to begin. (I apologize for the quality - these were taken with either my camera phone or our point-and-shoot).

Once the pre-surgical consults were finalized, Ava was then given what they called "happy juice" that allowed her to relax and wind down, also preventing her from becoming anxious, frightened, or uncooperative for what was soon to come. Here's a shot of her just after receiving the drink. You'll notice daddy's in proper attire to escort her to the OR.

Shortly after Ava was given the calming liquid, she and daddy walked down to the OR, and the rest of us headed to the surgical waiting room only to wait and pray. Jeremiah appeared almost five minutes after us, reassuring us that she was in good hands and fell asleep like an angel. The surgery lasted just over four hours. All the while, the doctor had his nurses updating us on her progress. Thankfully, we always received great news. The surgeon mentioned during the consult that his intentions were to perform a robot-assisted laparoscopy but if there was a need to open her up, he would have to do so. We would only know in the end if this was the case.

I am so very thankful my parents were able to come with us. They were true blessings to have there for emotional support and much needed assistance with Audrey. I think she wore all four of us out! She was a definite sweetheart, but a sweetheart with loads of energy. She recently learned how to walk just over a week ago, but still isn't quite stable yet to walk all around independently. So, having to carry her (because she can only take the stroller for so long) or assist her in walking can be very exhausting. How cute is this pic below of Granda reading Audrey a story while we were waiting for Ava's surgery to end?!

Just after 4:30pm, Ava's surgeon came in to get us from the waiting room. He took us into a private consult room to discuss her status. Great news... she did excellently and didn't have to be opened up! Once she would begin waking up, we could go into the recovery room to see her. She was definitely scared and crying when we saw her, but after mommy, daddy, and blankie were brought in, she was almost immediately calmer. Ava's new boo-boos consist of four small incisions on her abdominal region, one of which is on her belly button. It is definitely difficult as a parent to see what our precious daughter had to have done to her, but we know that the superficial scars that will fade over time were meant to be made in order to save the life of her kidney and reduce the effects the blocked ureter was ultimately causing on her body.

That night we slept in the hospital. Daddy, mommy, and Audrey stayed in the same room as Ava. Granda and Nanny had a room in the Ronald McDonald house within the hospital, close by in case Audrey and I needed a different location for the night. We did, however, end up staying the entire night with Ava. Other than a couple of times being awoken by a nurse or the one time Ava was nauseous and vomiting, we all slept pretty good considering. Below is a picture of her the day after surgery.

Early afternoon one day post surgery, Ava had been progressing so well that her medical team felt she was ready to go home. We were so glad!

At home she was very careful, completely aware of her new "boo boos". She would ask us to pick something up for her, knowing the bending over was still off limits. We would also assist her up and down the stairs. She mostly stayed on the sofa, lying on her soft pillow and watching her favorite movies and cartoons. When she did get up to walk around or play, she was very cautious. She appeared to be recovering well despite a very poor appetite. At this point she was taking in a pretty decent amount of liquids.

Thursday morning, however, brought bad news. Ava woke up dry heaving with inconsistent vomiting. She also appeared to be very dehydrated as she hadn't taken in much fluids through the night or early morning. Plus, her diaper from all night was completely dry. When she did finally have a wet diaper, it was completely filled with concentrated blood. We were told she would have blood in her urine for a while after surgery because of the disruption placed on the kidney, but it was clear after this diaper change that she was not getting enough liquids in her body to dilute the blood that was being expelled. Not entirely sure of what to do, I called UPMC and was advised to take her to Ava's PPC (primary care physician), who then advised us to go immediately to the ER.

Daddy met us there since he was back at work that day. After five hours in the ER, a quick IV, and anti-nausea medicine, Ava was soon back to her playful, smiling self. Hallelujah! Since then she has been rapidly progressing. Her appetite is almost back to normal. She can now bend over and walk independently up and down the stairs. She also hasn't complained of her belly hurting for a couple days now, which has allowed us to ease up on her pain meds.

I am so very thankful prayers have been answered, and Ava's kidney will now be completely healthy. She will continue to be monitored for several years to come, but for the most part, the long awaited height of surgery has joyfully come to an end. She can go on with her youth as a healthy, beautiful little girl.

Thank you all for your precious thoughts and prayers. We are so blessed to have such wonderful friends and family who have gratefully provided much welcomed emotional and physical support.

Blessings to you all,

Trying Times: Ava's Kidney Update - Part 3

(For those of you who have just started following, the entire story involving Ava's kidney condition leading up until now can be found here - Part 1 and Part 2).

Tuesday, Nov. 1, we took Ava up to the Children's Hospital of UMPC for her kidney consultation. We didn't really know what to expect. For all we knew they quite possibly could have been planning to schedule her surgery for that very same day. Regardless, we were prepared for whatever they were planning to do.

We arrived on time at a half and hour past one o'clock in the afternoon. After the nurse had taken her vitals (bp, weight, height) we went to our examination room to wait. The first doctor who came in discussed the same information with us as our doctor in Morgantown, just confirming what was functionally going on with Ava's right kidney. After the medical history was complete, she then preformed a renal ultrasound on Ava (this was actually Ava's second renal ultrasound; she had one completed the early part of this year shortly after her UTI). The results of this ultrasound were again confirmation of the progress of her kidney abnormality. Once the ultrasound was complete, she suggested that we have a VCUG (voiding cystourethrogram) completed. She wanted to confirm whether Ava's kidney also has vesicoureteral reflux, which is an abnormal movement of urine from the bladder into the ureters or kidneys. This procedure was not something we were looking forward to having done. It involves having a catheter placed and filled with a radiocontrast agent and is then watched while it moves through the bladder and urinary system. The thought my little girl having to go something like that sounded just horrible!

We had no other choice. We had to know the results of the procedure. So, we were sent to the second floor to have the test completed. Only one parent was allowed to come with her, so Jeremiah chose to go. I stayed with Audrey in the waiting room. I hated not being able to go with her, but I knew this was better. I didn't know how long it would take, and knowing Audrey, she would want to be fed during that time. Plus, I'm sure I would have cried during the whole experience anyway. Jeremiah kept his cool and was very encouraging and supportive of her while she was going through it all. I'm not even sure how long it took. I just remember seeing her walking out of those doors and me running to her grabbing her up! I never wanted to let her go again. I could tell that she cried during the majority of the exam because her face was swollen and bright red. They were so nice to her after it all by giving her a princess tiara, a little purse, and loads of stickers. 

We went back up to the third floor to finish up the consultation. The urological surgeon came in to discuss the results of the VCUG, and thank Jesus, they were negative. What a blessing! We then discussed the upcoming surgery to correct her kidney abnormality. He explained it to us like this... she'll basically have a laparoscopic surgery performed to remove the portion of her ureter that is obstructed, replace the portion with healthy tissue, and then have a stent placed inside the kidney to drain the excess urine. The stent will then be removed after a certain amount of time (probably 6 weeks or so) making sure the kidney is then filtering and draining on it's own.  

Here are a couple shots just as we were leaving the hospital. (I apologize for the quality - I only had my ipone on hand at the time).

Ava did experience a good bit of discomfort following the exam. She cried several times during urination and had several hours worth of bloody discharge. And the poor little thing had an awful night of trying to sleep as she woke up crying almost every half hour. We also heard her cry out "No" several times during the night. It's possible that she was having a nightmare about the procedure. But, thankfully, the following day, she was back to her very sweet little self!

Her surgery has been scheduled for the end of January 2012. Again, I'd just like to thank everyone for all of your kind thoughts and prayers. We truly appreciate the encouragement and support.

I'll be sure to keep you posted with the results of her surgery and all other updates regarding her current kidney condition.

Trying Times: Ava's Kidney Update - Part 2

For those of you who have just starting following and haven't been informed of my daughter's kidney condition, click here to read the entire current story. 

Let me take a moment to briefly update you regarding her condition as of now. This week Ava had an appointment at the pediatric department of the POC (Physicians Office Center) to have a 24 hour blood pressure cuff placed. She was sent home to keep the cuff on for the entire day (and night). I've got to say that Ava did pretty good keeping her moniter on for such a long time. Not only did she have the cuff around her upper left arm, but it was also connected to an approximate 2 pound box that recorded each reading, which she was required to wear during the process. The box had a strap (that was much too long for a 2 year old to comfortably wear) that she was supposed to keep diagonally around her shoulder/neck. Well, let's just say that she did pretty good keeping it on...

But, she did on many occasion just let it drag behind or beside or even beneath her. Who can blame her, right?! Mommy kept reminding her that it was her "purse" and girls like to keep their purses on them. That usually worked, but seriously, how can you keep that up for 24 hours?!! It didn't really bother me that she dragged it around throughout the day. I could see that the monitor and cuff weren't easy to damage. But what did concern me was the fact that she had that strap to sleep with all night long. I didn't want her to somehow strangle herself while sleeping. So, I decided to wrap the long strap twice around her Winnie the Pooh bear. Poor Pooh, I know. But he didn't seem to mind the sacrifice, and I assure you, he was his old self in the morning ;)  She didn't sleep very well that night considering. This was because every so often the cuff would beep, tighten, and record her blood pressure. It's not exactly easy to sleep when something is constantly beeping at you and squeezing your arm all night long. Poor thing. I'm so glad we only had to deal with it for one night!

Thankfully at noon the following day, Ava, removed her "purse" for good. She was more than happy to do so. Once we return the monitor to the doctor's office and they have a chance to collect the data, we'll then be given the results. I think they just want to make sure her blood pressure is stable because the nurse did inform us that hydronephrosis can lead to high bp, which we certainly don't want to happen. 

As far as what happens next, Ava does have a consultation with Pittsburgh hospital (UPMC) the early part of November. We'll then make arrangements for her upcoming surgery (that is to be scheduled following the consult). 

I plan to keep you updated, and thanks so much again for your thoughts and prayers!

Trying Times: Ava's Kidney Update - Part 1

For many of you, this will be the first known knowledge of Ava's current kidney condition. Around mid-October of last year, Ava developed a high-grade fever above 102. After a visit to the pediatrician, the results of the exam revealed a UTI (urinary tract infection). She was prescribed an antibiotic and was soon back to her normal self. However, at that time our pediatrician recommended further testing secondary to the results of the UTI and referred us to a pediatric urologist at Ruby Memorial Hospital. Following our urology exam, we then scheduled (per the urologist's recommendation) a renal ultrasound (this was around February of this year). The results of the exam revealed Stage II Hydronephrosis, which is basically a condition in which urine trapped in the kidney causes it to swell. The cause of the trapped urine was unknown at this point, therefore, yet again, further testing was required. It wasn't until yesterday, September 20, 2011, that we were able to complete the next step of the process. The test Ava was required to undergo was a Renal MAG3 (Mercaptuacetyltriglycine) Scan. This test would allow us to understand more about Ava's hydronephrosis, determine kidney function, and detect an obstruction if present. Before I begin explaining the results of the exam, let me share with you, from a mother's point of view what yesterday was like for us, specifically for our precious little girl.

We arrived at the hospital just before 8:30am and were registered in the Nuclear Medicine department. The four of us (yes, we brought Audrey along - we prefer to have the whole family together as often as we can and especially during trying times) were escorted back to the examination room for the pre-exam procedures. Typically this test does not require anesthesia, but because Ava is under the age of 5, and unable to sit still for the required 45-60 minutes with an IV placement, she was required to be put under. After family history questions were completed and parental permission was given, she was then placed on the exam table for IV administration. This part was so hard for all of us. The nurse attempted placement in her right arm with no success. She then attempted placement in her right hand with no success. Then she called in another nurse, who choose a larger needle to attempt placement in her left arm - finally success. But, we were all in tears at that point. My poor little baby had to be pricked three times before the IV would successfully enter her vein, and during the whole process, she was begging me to help her. Talk about pure torture! And just when I didn't think it could take any more out of us, this next part of the procedure was probably the most emotionally-trying part. When the anesthesiologist began administering the anesthesia, Ava started acting funny and began looking at me as if she didn't recognize me or even know me just before she feel into a deep sleep. My heart literally broke into a million pieces. I understand the effects of the drug. I've even been put under a couple times myself, but seeing my daughter have to go through that right in front of my eyes, is something you can never emotionally prepare yourself for. I was scared for her. So many fears arose inside of me. "What if she never wakes up?" "What if she's never really herself again?" After the one hundredth kiss on her cheek, a consoling hug from the nurse, and a supportive "We'll take good care of her" from the medical team, we were asked to leave. The exam lasted well over an hour. We could only wait and pray.

Once the exam was completed, we were allowed to see her. She was still waking up. The effects of the anesthesia lasted a good while after she awoke. She appeared to be dizzy and clumsy. We were careful to make sure she didn't fall over when she insisted on walking. After the exam, we headed over to the Physicians Office Center for a follow-up appt with her urologist. Our appt was scheduled for 11am... we didn't see him until 1pm! You can imagine how exhausted we were at this point (especially trying to keep a 7 month old baby happy all the while!), but once he began discussing the results, we were thankful to have had the opportunity to see him. According to the doctor, the results of the scan revealed that both kidneys were functioning perfectly. The scan also revealed, however, that while the left kidney is filtering normally, the right is filtering little or nothing at all because it is obstructed. He said that he would have to refer us to a doctor in Pittsburgh, who will have to surgically remove the obstruction.

Everything is starting to make a little more sense now. This obstruction explains why there was very little amniotic fluid in my womb when I was pregnant with Ava. Her body wasn't filtering or possibly creating enough urine. This ultimately led to her being breech and to her Cesarean delivery.

Once we were finally back at home yesterday, and the girls were fed and bathed, they played together as if nothing had changed. I was so thankful to have both our daughters at home safe and sound with their daddy and mommy. Here they are playing so cute together in Audrey's crib.

I know that the Lord is always in control.

I praise God that she had the UTI back in October last year. Without that infection, we would have never known something was structurally and functionally wrong with Ava's kidney. I praise God that there are modern advanced technologies, such as the MAG3, that allow us to discover abnormalities within the body before permanent damage occurs. I praise God that before my little girl was even created, He had a plan for her, and I know that we can only trust in Him to continue to guide us in making the best decisions for our daughter. We can only place our faith in Him to hope for a safe and healthy outcome for her.

Please keep her in your prayers throughout the rest of this journey. She will be scheduled to see the pediatric surgeon in 3 to 4 weeks from now. We'll be required to stay in Pittsburgh for a couple days during this time. At that point, we'll know from there what's next. But from what the doctor here at RMH and from what I've researched on my own, the prognosis from this type of surgery is excellent. They should be able to remove the obstruction and regain normal kidney filtration. We sure are hoping and praying that this will be the case.

I know most of you will agree, that I would gladly give either of my daughters one or both of my kidneys if I could. Our daughters are so very precious to both of us. Being a mother can be so very challenging. It can be so very trying. It can even be heart-breaking. But I wouldn't give up being the mother of these two precious angels for anything in the world!

I'll be sure to post an update on Ava's kidneys when the time comes. Until then, your thoughts and prayers are gladly welcomed.