Home!!

After 19 days at Texas Children’s Hospital, we were released yesterday and brought our precious daughter home. Praise God! The relief at walking through our front door, not having been home since we left for the Emergency Room so many days before, was overwhelming. Campbell took one look at her cats, who greeted us at the door, and yelled “Meow!”.

Campbell came home on one medication for blood pressure, as well as aspirin (short-term) to prevent clotting after her surgery. We will monitor her blood pressure several times a day. We follow-up with the renal doctor in a few days to report the blood pressures (which have been pretty good so far), and will return for a visit at the beginning of next week. I would be lying if I said I was not terrified to have her at home. It hit me last night as we were unpacking her blood pressure monitor and preparing to take her blood pressure for the first time, that we weren’t just home from a long vacation, that something was different. We would continue to ask for prayer as Russ and I learn this new role in parenting Campbell.

While it is obvious she is happy to be home, to see her cats, and to play with her toys, Campbell does show some signs of trauma. She is scared to be left alone, fearful of her bed, her highchair, and just terribly clingy in general. Russ and I are taking things slowly, asking God for guidance, and attempting to get her back to “life as normal”. For the most part, she is as happy as can be. Ironically, as soon as we got home she dug through her toys and pulled out the blood pressure cuff from her doctor kit. She has spent the better part of yesterday evening and today putting that little cuff on everyone and everything (me, Russ, her babies, stuffed animals, the cats, herself, her milk cup…). The counselor in me is fairly certain she is simply acting out what she has been experiencing so frequently for the past few weeks.

As far as Campbell’s long-term treatment, much of that will depend on how controlled her blood pressure remains. She may stay on the medication and dosage she is on forever, the dosage may need to be increased in the near or distant future, or her blood pressure may indicate that her arteries need to be reexamined. As she grows, her arteries may grow with her and her need for medication diminish. Or it might go the other way and she may need additional surgeries to open up the same or other arteries. Through the use of ultrasounds, the arteries can be monitored less invasively if her blood pressure indicates a need.

While nobody imagines anything being wrong with his or her child and while this new lifestyle is definitely something we are having to settle into, as we pulled into our neighborhood yesterday I became overwhelmed with thankfulness that we were bringing her home at all. On that first day, in those hours between the emergency room and the PICU, I kept imagining the heartache of coming home without her and seeing all her toys and books in the living room, all her things all over the house, and her not being there. I will never stop being grateful for where God has brought us.

Thank you to all of you who have walked this journey with us. For the visits, calls, texts, emails, food, cards, packages, and prayers, Russ and I are so thankful. The support of the people around us has been invaluable during these past few weeks and has often kept us going. It is our hope that we would be a blessing to the people around us, as so many have surrounded us and blessed us when we needed it most.

A Different Kind of Halloween

This may not have been how we envisioned spending Campbell's 2nd Halloween, but we are so thankful for the continued exceptional care of our sweet girl here at TCH, for her road to recovery, and for the light at the end of the tunnel (stay tuned for some great news that may be coming soon!)

Answers

“I lift my eyes to the hills –
where does my help come from?
My help comes from the Lord,
The Maker of heaven and earth.”
Psalm 121:1-2

Yesterday Campbell was scheduled for a CT of the kidneys. Midday, the doctors determined it would be more effective to do a conventional angiogram. This is basically a surgical procedure where they insert a catheter through an artery close to the groin and go up into the body, looking at arteries and blood vessels. In Campbell’s case, they were focusing on arteries around the kidneys. The thought was that, and this was tentatively verified by some of the labwork that had come back, her arteries leading to the kidneys were likely too small, restricting blood supply to the kidneys, forcing the body to work harder to get blood to the kidneys, and causing her blood pressure to elevate. The advantage of doing this test over the CT was that if there was a problem, the doctors could fix it while they were already in there.

Yesterday was scary. To safely put Campbell under anesthesia, her blood pressure had to be under a certain number. Many times yesterday it was above that number. Besides the two blood pressure medications she was on around the clock, when her blood pressure when past a certain point, she would get an additional medication put under the tongue to work immediately. This happened about ten minutes before she went down for surgery.

When Russ and I took her in for surgery, the doctor and anesthesiologist gave us the rundown of all the things that could go wrong and had Russ sign the consent forms. Then they gave Campbell something in her IV to start to calm her down before they took her. Our sweet girl got a serious case of the giggles immediately. It was a blessing to leave her for surgery with that memory.

After two and a half hours, the nurse came out and told us that the artery going into her right kidney was small and they had used a balloon to make it bigger. This is called Renal Artery Stenosis. There was much celebrating by us and her gaggle of grandparents in the waiting room, as well as later on our floor by the sweet nurses and team of doctors who have been caring for her for the past 2 weeks. When Russ and I were allowed to go into the recovery room, her blood pressure was 100/40. Even on three medications that day and throughout the last several weeks, this is significantly lower than any blood pressure we had seen.

Campbell slept through the night and is doing great today. She woke up her normal, happy self and has eaten, read books, and ridden the wagon through the hospital today with her grandmothers. She seems to have forgotten she had surgery last night!

The plan at this point is to wean her off her current blood pressure medications and start her on another, an ACE Inhibitor, which will further increase blood flow to the kidneys. The doctors speculate that it will take anywhere from a few days to a week to make the medication adjustments and get her stabilized on the appropriate medications for her, now that we know the diagnosis.

Our words can never say thank you enough for the prayers that have been said for Campbell. To say the last few weeks have been trying is an understatement. While our adventure at TCH is not quite over yet, and Campbell will require some ongoing care and monitoring, the relief and joy we have at knowing what is going on and having part of the problem fixed is overwhelming. I have no doubt that it is through the prayers of so many that God has brought us to this point, and has provided the strength and grace for us to make it in the meantime.

Procedure today

Campbell is having an angiogram at 3:00 today, where she will be sedated and they will make an incesion in her groin and go in with small wires and cameras to look at the arteries surrounding her kidneys. Restricted arteries around the kidneys could be causing the blood pressure to increase. If they find restricted arteries, they will go ahead and put stints in. Please pray for our girl!

10 days

We are at the end of our tenth day at Texas Children’s. Eleven days ago we brought Campbell to the Emergency Room, thinking nothing was wrong other than a virus and a case of dehydration.

Campbell’s blood pressure has stopped responding to the medication for Liddle Syndrome. Over the past three days the doctors have increased the dosage about 400%, spread out the medication into two doses in order to insure she has the medication active in her system throughout the day, and yet her blood pressure has continued to remain erratic. Over the past few days it has been on the high side and has necessitated an additional blood pressure medication to lower it immediately. Today her blood pressure continues to rise, despite a small dose of an alternate blood pressure medication. While the doctors have not completely ruled out Liddle Syndrome, it seems they are definitely moving away from that as the diagnosis of choice, as she is just no longer responding to the medication.

Which kind of brings us back to square one, in a sense. The doctors are seeking to determine why Campbell has such extremely high blood pressure, rather than to just send her home on blood pressure medications without determining the cause. The initial blood pressure medications she was on, which stabilized her dangerously high pressure, are not medications that she could remain on long-term anyways. We are scheduled for the DMSA scan of the kidneys for tomorrow. This evening they started an IV that is needed for this nuclear test. We have high hopes that this test will show something that could be causing her high blood pressure. There are still a lot of lab results that have not come back yet, but we have been told that these labs (which were done on the first day in the PICU), could possibly shed some light on what is causing Campbell’s blood pressure. There is also an additional test of the kidneys that may be done Tuesday, depending on the results of the DMSA scan and labwork.

So basically we wait. While grateful for the things that we know are not wrong, I feel frustrated with not knowing, frustrated with the pokes, bruises, and bloodwork, frustrated that my sweet daughter has to go through this at all. And as much as I know God is trustworthy, I feel scared. Scared of a life for her that involves a blood pressure monitor every day. Scared of more hospital stays. Scared of answers not coming.

I do feel so grateful that Campbell has taken all this in stride. While there are moments that are definitely bad for her (who would like to be woken up at 5:00 am everyday with a blood draw?), she has been the sweetest, happiest girl for the most part. Sometimes I wonder if she thinks about home, her bed, her toys, and her cats, but she seems thrilled to spend her days surrounded by and attended to by all the people that she loves the most.

I know so many are praying. For that we are so grateful. Please continue to ask God to provide answers. Please pray for Russ and I, and our families, for endurance. I want to choose faith, to choose to believe in God’s power and purpose in this situation, however there are many moments in the last few days where that seems so hard.

Campbell Update 10-22-09

On Tuesday morning we were moved from the PICU to the 12th floor, the Renal (kidney) floor of TCH. While I was very relieved to leave the PICU behind and glad for the progress Campbell was making, leaving the security of the constant monitoring was a little scary.

Campbell got to be totally unhooked when we got up here and has enjoyed her freedom. It took her a day or so to get her “sea legs” back, but she is regaining muscle strength and coordination and has been walking around, reading books, going for rides in the wagon, and enjoys the loads of attention she has been getting! Her appetite continues to improve and she is slowly putting on some weight, which makes us all happy. Girl had gotten kind of scrawny!

Yesterday they did a VCUG, a test to determine whether reflux was occurring in the kidneys. The test came back totally normal. This means no urine is going back up into the kidneys. This is GREAT news! We are still waiting on lots of lab results to come back. Most of these labs were performed last Friday and Saturday. Because many of them were fairly obscure and unusual in nature, it takes more time to receive the results. Her blood pressure continues to be erratic and went up higher yesterday afternoon. The doctors increased the dosage of her medication and her pressure became more stable after that. I asked if they were concerned about the increase in pressure and they indicated that the fact that her body responds to this medication means they are on the right track with the diagnosis of Liddle Syndrome. They want her to have stable blood pressures at no higher than 120/80 for several days before we go home.

The doctors have tentatively indicated that we are looking at early to mid week next week before we will be able to go home, but are pretty clear that is speculation. She will have another test on Monday, a DMSA scan of the kidneys. This test looks at damage to kidneys that might have previously occurred and at kidney function. This morning our insurance approved payment for the hospital grade pediatric blood pressure monitor the doctor requested for us to have at home to monitor her blood pressure. This is a huge thank the Lord, as this equipment costs multiple thousands of dollars!

And now, on that note, I must sing the praises of some incredible people. From our families who have been here constantly, literally making sure someone was here all the time while Campbell was in the PICU, making sure Russ and I ate, had clothes, got showers and sleep. To our neighbors doing our laundry, bringing us stuff we need from home, taking care of our cats. To our church family cleaning our house (that is sacrifice!), mowing our lawn, and bringing us food. To my co-workers and Russ’s co-workers stepping in to take on aspects of our jobs (or in my case, my whole job!) so that we do not have to worry about work. Truly we have never been served like this before. Russ and I are unable to express the gratitude we feel towards those who have given of themselves to love us and take care of us over this past week. These people have been Jesus to me this week, and I feel blessed to know and be loved by the people in my life. Thank you again for your prayers.

We would ask that you continue to pray for Campbell, and for us, as we walk this road.

Campbell Update 10-19-09

Hello all! I want to first thank you for the outpouring of support for Russ, Campbell, and I. We are so blessed to have such incredible people in our lives, to have such incredible “prayers” for our girl, and we have felt loved, supported, and cared for every minute of this crazy ride.

I thought I would update you all, so many who have asked for information about what is going on now, with where we currently are and where the doctors are in finding out what is going on with Campbell. (Prepare yourself for medical jargon…) The doctors are currently leaning towards a few options to explain Campbell’s high blood pressure and frequent loss of sodium, potassium, and other electrolytes.

The first, and I guess what the “working diagnosis” is at this point, is something called Liddle Syndrome. Liddle Syndrome is an extremely rare genetic disorder that causes early and severe hypertension, as well as the electrolyte imbalance Campbell has had. Rare might be an understatement, actually. The majority of the team of Renal (kidney) doctors here at Texas Children’s has never come in contact with a case. We were told the other day that in the history of the hospital there have only been about 4 cases.

In order to determine if Campbell does have Liddle Syndrome, they have slowly weaned her off the blood pressure medications that she was put on to stabilize her blood pressure initially. At the same time, they have started her on the medication used to treat Liddle Syndrome. This is also used as a diagnostic tool, so if her blood pressure remains stable or even improves, it will indicate she does have this disease. Liddle Syndrome would be treated with this particular medication, as well as a sodium supplement.

We are also waiting for lab results to come back to rule out some other things. Some of these lab results, while not confirming Liddle Syndrome, can also indicate that it is probable.

Another possible cause is reflux occurring in the kidneys. This basically means that urine is going back up the tubes into the kidneys and forming scar tissue. This can also cause high blood pressure. The doctors want to do a VCUG, injecting die into the kidneys and watching what the kidneys do with the urine. They aren’t able to do this until she is off some of the IV meds, so they keep saying “later this week”. If that is the case that reflux is occurring, that could be a surgical issue, depending on the extent. It is also definitely possible that she has both reflux of the kidneys and Liddle Syndrome.

While we are still in the PICU and not sure of any kind of timeline, we are in a much better place than we were a few days ago. One of the doctors told me yesterday that we were out of the realm of “dangerous” and into the realm of “uncommon” and “very very uncommon”. I never want to be in the dangerous realm again. Campbell was able to start eating yesterday, has been keeping things down, and is much happier and more content than I ever imagined she would be laying in that little bed. She definitely has moments of frustration about being so confined, however she is being a trooper, has requested music (“mu”), done lots of bed dancing, and we have read about a million books.

We ask you to continue to pray as the doctors seek to find out what is going on with Campbell, so they might treat her to the best of their ability. We are so grateful for how far we have already come and know God’s hand has been so evident in that!

Sitting up for the first time and excited to eat breakfast!

Being just a little mischievous with her "gear"