There and back again

I think I left off on the last post while we were waiting to be released from the Hospital.  Well, we did get to go home on Monday evening.  It is now Thursday.  The first 2 days home were really rough.  Cailynn was super cranky and cried most of Monday night and Tuesday.  Wednesday was better, as she took longer naps during the day and didn't cry so very much, but still wouldn't let me put her down.  Last night we were blessed with a "normal" night and today I have my baby back!!  She is back to her regular eat, sleep, wake, cry patterns and lets me put her down occasionally.
Tuesday was our first visit to the ENT to check our the cyst in her mouth.  We were relieved to hear that it poses no problems right now, so the plan is to check back in 6 months.
Wednesday was the first day in a while that we didn't have to see doctors, so we just enjoyed a day off.
And that brings us to today.  We went back to the urologist at Children's.  He reviewed the DMSA scan (done Monday, pictures posted) and reviewed her hospital stay information.  The scan did reveal that the right kidney has much poorer function than the left one, but beyond that, the radiologist's interpretation is more subjective than objective in our case.  We were told the scan showed the left kidney functioning at about 73% and the right at 27%. 
In light of her infection and to help keep her from getting more, she will be having surgery the first week of August.  In this surgery, the doctor will use a scope and burn a hole in the uereterocele to drain it. This should help decrease the VU reflux which in turn will help to keep her free of infection.  The dangerous part of this surgery is the general anesthesia she will undergo at a mere 8 weeks old.  It is a 45 - 60 minute procedure, but because of the anesthesia, we will have to stay overnight.  It goes without saying that she will need another IV - probably the most traumatic and painful part of the whole procedure this time!!  We are just waiting to hear what day the surgery will be scheduled for.
As I sit here and write so clinically about what is going on, I am trying to sort out my feeling about all this.  We say we are trusting God with all this, but I am unsure exactly what that "looks" like.  Sometimes I feel like a robot, just doing what we need to do, going through the motions and saving all my own thoughts and feelings about it for some other time....??

Give all your worries and cares to God, for he cares about you.   1 Peter 5:7

Pictures from the DMSA scan Monday

Long days, longer nights

Well, its Monday, Day 3 in the hospital (technically day 4 if you count the day down in ER, and WE DO!) No more fever since Friday night, so the past two days have been uneventful, just waiting. The cultures came back as expected; nothing grew in blood or spinal fluid, but negative gram rods grew in urine, confirming the infection, The absence of bacteria in her blood and spinal fluid means that the infection did not spread to other parts of her body. The first overnight, both baby and Mom slept well, due to exhaustion. The second overnight wasn't as good with baby really fussy and clingy, but we made it through, despite the frequent pokes and prods from the nurse every 2 hours or so! Last night was better. Cailynn was not so fussy, but still only slept on Mom, so I slept better, but by far not well. But Moms are used to functioning on little sleep so its no big deal really.

Which brings us to today. The plan is to be home by dinner. The DMSA scan (kidney function test) was ordered for today, but not yet scheduled. I was told they usually do inpatient testing in the morning, so hopefully we will know by 9am when we go. There is a 2 hour wait time between the injection and the imaging. We also expect our urologist to come by today too. He's got the final word on our discharge, but the doctors here don't see any reason to keep her here longer.

Hopefully our next post will be from home!!

4 dolphins...

Well, this weekend isn't going as I had planned!! Thursday afternoon, after the big kids came back from VBS, Trent took us out to Englewood Metropark for a hike. We saw lots of bugs and wildflowers and even a couple of Blue Angel jets practicing! It was a really nice family day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

That evening, as I was getting Cailynn ready for bed, she felt hot to me so I took her temp. It was 101.4 I gave her some Tylenol and in an hour, her temp had dropped, so we went to bed. She stayed ok through the night, but started getting hot again in the morning, so when we got up at 8am, I took her temp again and it was 100.5 Thankful it was Friday and not Saturday, I called and left a message for our pediatrician. They called back in a few hours and told us that, because of her age (6 weeks) and her kidney/ urinary tract issues, we needed to take her to Dayton Children's hospital ER.

Obviously this is not what we wanted to hear, and we had mixed feelings about it. We didn't want to get there, wait 6 hours to see a doctor, be give a Rx and sent home $100 poorer, but we didn't want to take any chances with her health either. Honestly, I thought she'd get a urine test and depending on the results, we'd leave with new medicine or be told she just has a virus. We were not aware how serious it is for a baby this young (under 8 weeks) to have an infection. Apparently, since her immune system is still so underdeveloped, it is very easy for an infection to get septic quickly, go to her brain and cause brain injury/ death!

We got to ER at 11:30 and were seen almost immediatly be the ER doc. Thats when we got our first shocker of the day! The doctor ordered blood tests, a urine test, and spinal tap! I think we all cried throughout the whole ordeal. First they tried to get the urine, but as they were inserting the catheter, she peed, so they had to try again later. Then they brought out the needled for the blood draw and IV block. They tied off all both arms and legs looking for a good vein (any vein, by the sound of it!) before trying one of her arms. It didn't work, so they called another nurse in to try. It seemed to take forever, but she got the IV block in. I think we had 10-15 minutes to regroup before the phelobotomist came back to draw blood. It took 2 sticks to get the amount he needed because the first one clotted. Pretty quickly after that the doctor came back to get the spinal fluid. We were not allowed to hold/ touch her during the procedure. That, and hearing her cries of pain, was emotional torture!

Once they got everything they needed from her, it just became a waiting game. The tests were to take about a half hour, we were told. So we waited. Cailynn finally had a chance to nurse and sleep, held tightly by Mommy. We recieved the test results when expected, but not what we expected.

Blood and spinal fluid came back good. Urine didn't look so good, indicated a urinary tract infection. Despite the amoxicillian she has been on since birth, an infection got through. We then got our second shocker. She was going to be admitted to the hospital and we have to stay 2-3 days. They put her on some different antibiotic and we couldn't leave until the blood, spinal fluid, and urine cultures came back, 48 hours. So we just waited to be admitted. And waited, and waited. Finally Trent went to get some lunch at 3pm. And at 5pm someone from admission came and took us to our room. There is a painting of 4 dolphins in our room, hence the title of this blog (since "A Day in the ER" sounds boring!)

The rest of the evening was spent recouperating from the day. Cailynn slept and nursed a lot. Mom and Dad rested and prayed, contacted family and friends, and even had a few visitors.

Baby and Mom slept well through the night. Dad slept at home. The rest of the kids slept at Nana's house.

One month, one week, & one day old.

These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up.  Deuteronomy 6:6-7

I was just going to use this blog to keep friends and family and anyone else joining us in prayer over our baby up to date on her condition, medical procedures, doctor appointments, etc.  But it dawned on me today that I cannot separate her physical journey in this world from her spiritual journey.  This babe has had praying hands laid on her since she was in the womb. She has been covered by prayer since before she was born.  Every time we are faced with scary medical tests/ procedures, every time we take a moment to think about the surgeries she faces, perhaps 2 even before her first birthday and are overwhelmed with fear and sadness, we gently place her in God's hands.  He created her, He knows her future.   

Today we had Cailynn dedicated in church. Usually I wait until the babies are a bit bigger, but I don't know what is in our future so I thought the sooner the better in her case. Every other Sunday at church, Cailynn sleeps quietly almost the whole service. Today, she was quiet but alert until the singing stopped. Then she got fussy, and by the time Pastor Joe got her, she was out-right furious!!! Oh well...

Here are a couple of pictures off my camera (the family one is not so great!).  Hopefully my friend got some better ones on her camera!

And this is at the church picnic later that afternoon "eyes open!" as her big sister would say!

A busy week, medically speaking.

Monday morning found us at two different doctors; Cailynn, Corinne and I at the pediatrician, and CJ, Carissa and Trent at the orthodontist for CJ. Cailynn had her 1 month check-up. She is now a whopping 10 pounds!!! and grew an inch too. Really glad to see that she is growing well, though I wouldn't have minded her staying little just a bit longer! The Doctor heard a heart murmur during his examination and referred us to a cardiologist for an electrocardiograph. I know a lot of babies have a heart murmur (I had one, Corinne had one) but because the kidneys and heart develop at the same time in utereo and because Cailynn's kidneys have problems, the Doctor wanted it checked out. We got that scheduled for Friday (today), the same day as out appointment with the urologist.



Which brings us to today! We began today at Children's Medical Center in the Cardiology department. To be brief, the EKG was uneventful (meaning Cailynn didn't put up much of a fuss) and the doctor said that he didn't see anything out of the ordinary. Yipee!
Then the receptionist from Cardiology took us to Urology. We were an hour early for our appointment. Of course as soon as I left to take Cailynn to change her diaper, we were called in. So I hurried back, baby half dressed, and we were taken back to a room, where we waited another 20 minutes until the doctor came in. He reviewed Cailynn's renal ultrasound and her voiding cystograph with us and then drew us a picture illustrating the problems with her kindeys.

There are 2 issues, but they are related. She has the duplicated ureter in her right kidney and ureterocele (a tiny hernia) in her bladder. It also appears that the upper lobe of her right kidney is not functioning well (that's where the extra ureter is attached). She also has VU reflux, pretty severe. VU reflux is characterized by grades 1-5, 5 being most severe. She has grade 4-5. This has caused her ureters, and kidneys to some degree, to become swollen.

So the plan is..... she needs a test of her kidney function (DMSA) to see how well that right upper lobe is working. The doctor is assuming it is not working well. If that is the case, she will need surgery to remove it (and as much of the ureter that is attached to it). That woud occur when she is 3-4 months old. If, on the other hand, it functions well, surgery will not be needed.
She will also need surgery to re-attach the 2 remaining ureters to her bladder and remove the ureterocele. This, we were told, is a much more delicate and complicated surgery. Therefore the doctor prefers to wait until she gets bigger/ older. Maybe 6 months old - 2 years. This will depend on her staying infection free.

For now we continue to pray for healing and keep giving Cailynn antibiotics. We are waiting to schedule the next procedure, DMSA. This procedure requires Cailynn to have an IV and most likely be restrained for 30-45 mins. I imagine it will be scary and uncomfortable for her, so we are praying for her to experience peace and comfort throughout the procedure. Also, we pray that the right upper lobe functions well enough that it doesn't need to be removed.