Baby I Love You

It was another good day, a trend that we could get used to. Carly continues to eat well and they removed her NG feeding tube and the central line that has been running into her right jugular vein since June 6. She is a little swollen from the medications and IV feedings but that doesn't stop her smile from brightening everyone's day.

Today is the day we bid farewell to June. I have always liked it as months go, but 2009 is one that I never want to repeat. It is hard to believe that we have spent nearly the entire month here in the fish bowl like rooms of the PICU. It is still impossible not to feel fortunate to have such an amazingly strong daughter, an incredible wife, caring and helpful family, and friends around the world that offer so much love and support. I can't wait to thank you all in person, on the outside.

Love, Brad

I Can See You Smile

Today marked a few big milestones for Carly. First, she cracked a little smile when Christa squeezed one of her favorite squeaky toys. It may have been a small smile, but after a 25 day hiatus from smiling we were thrilled to see it again. The second milestone is that she was just taken off of IV fluids for the first time since we arrived and she is now getting all of her fluids and nutrition from nursing. This is such a long way from last week, and very encouraging for a discharge home in the near future. The last milestone is that we got the official radiology report from last Friday's MRI and there is no visible tumor recurrence. Eighty-seven days of tumor free living and counting!

The last major issue is that Carly continues to have intense stomach pains any time she tries to poop. It is clearly excruciating for her and she turns blue and screams through the pain several times a day. We will likely push for an x-ray tomorrow that could help verify if the issue is residual barium from her diagnostic test last Tuesday or if there is a something else all together. If we can just get her through this last problem we should be able to put this latest chapter of "Life in the PICU" to rest.

Love, Brad

Life During Wartime

Our fourth weekend in the PICU is coming to an end and things are looking much more promising than they have the previous three. Carly's night and day were pretty good, interrupted with a few big rounds of crying. The incisions from her surgery are probably pretty sore, but mostly she seems to be bothered by some lower GI pain. The barium that they put in her belly on Tuesday went in easily, but it isn't passing through unnoticed. Apparently when it sits in your colon without any water to help it move through it turns into a hard solid mass, and that solid mass doesn't feel great on its way out. That issue aside, Carly seems to be doing really well. She nursed today for one of the first times in three weeks which is a major step toward home, and therapeutic for both mother and daughter. Tomorrow we will discuss with the team what they want to see before letting Carly finish her healing at home, and barring any major changes I expect that could be relatively soon.

It has felt like all out war here in the hospital for the last 23 days. Carly, Christa and me versus an unknown illness that kept returning just as we thought things were turning in our favor. There have been so many battles along the way I am almost beginning to forget the details. I think that is the brain's way of giving you a break from traumatic experiences. In the last seventy two hours the battles have finally started going our way. I believed all along that we would come out triumphant, only now does victory seem to be on the horizon.

Love, Brad

Beginning To See The Light

Carly wasn't feeling great this morning, but that was to be expected so soon after her surgery. By this afternoon things took a turn for the better and since 4pm she has been as peaceful as I have seen the entire time we have been here. She is handling her NG tube feedings well and is now up to a whopping 2 tsp (10 ml) an hour. Tomorrow morning we will begin to taper down the medications that she has been given over the last three weeks. Getting her back to herself without these medications and her being able to nurse are the two main hurdles between us and home. Today I saw a glimmer of light at the end of the tunnel for the first time and I expect it will be getting much brighter in the coming days.

Love, Brad

If You Can Heal The Symptoms

“If you can heal the symptoms but not effect the cause,
it’s quite a bit like trying to heal a gunshot wound with gauze.”

These lyrics from Phish’s song Sand have been running through my head for the last three weeks. While Carly has undergone countless diagnostics tests they have attempted to treat her pain symptoms with medications, but the cause remained a mystery. The medications gave temporary relief along the way, but the pain always crept back. On top of that, the medications have their own side effects which seem to make Carly uncomfortable making it even more difficult to figure out what the root cause really is.

It looks like we are finally zeroing in on a cause. This all started over three weeks ago when Carly started to have intermittent stomach pains at home. It escalated to the point of her going into shock the day we brought her to the emergency room. The gastritis that GI found could easily explain the sharp abdominal pain that Carly was experiencing and the results from this morning’s MRI give more of the story. They found that there is a lot more fluid collected between Carly’s skull and brain which is leading to excessive cranial pressure. While she was able manage her CSF without a shunt under normal circumstances, it looks like she is not able to keep up when under extreme pain which naturally increases the pressure it her head.

To relieve the pressure in her head, and help her in the long term, she went into the operating room once again around 5:30 pm today to have her shunt reconnected. The procedure took three hours, a little longer than expected, and in the words of Dr. Auguste, “Carly made them bring their A game once again.” They had to replace all of the shunt hardware including the catheter that runs from the shunt valve into the right atrium of her heart, but they are very happy with the result and said that Carly was strong through the entire procedure. She will be closely monitored over the next several days but we expect that this will finally give her the relief that she deserves. Thanks for continuing to lift her up with all of your love and prayers.

Love, Brad

We're Getting Somewhere

Last night was a good one for Carly. She slept comfortably on her back for most of the night, a position that she loves at home but has refused for most of our time here. This morning she started getting cranky and spent most of the day crying out if someone wasn't holding her hands or patting her bottom. Thankfully we were relieved for a few hours by Carly's grandmothers.

The medical team meeting this afternoon didn't turn out to be that useful. The one thing we did learn from GI is that Carly's stomach biopsy indicated that she has gastritis. This can give intense abdominal pain and could very well be the issue that brought Carly to the hospital in the first place. Gastritis would not cause all of the symptoms that Carly has had, but it is possible that the pain from gastritis combined with the atypical anatomy in Carly's head as she heals from her last brain surgery could be behind all of these recent problems. She will have a brain MRI tomorrow and we will follow up with the neurology and neurosurgery team to see if any parts of her brain appear damaged. Hopefully a complete picture of what has been going on is not far away.

Love, Brad

Sweet Dreams

The last twenty four hours have been pretty good. Carly was uncomfortable overnight with some stomach pains as the barium from her lower GI flouroscopy passed through her. We still managed to get at least 3 or 4 hours of sleep which was a big improvement over the last several nights. Her discomfort ended with a good barium diaper this morning and since then she has been pretty calm. She even got a sponge bath and lotion massage that she seemed to like.

The results from the fluoroscopy were normal, like every other test that she has had over the last two and a half weeks. We feel torn because it is great to hear that things look normal, but at the same time Carly is not feeling normal and we need to get to the bottom of this. The list of tests that they can still perform is getting pretty small at this point. We are meeting with the attending doctors from all of the involved specialities tomorrow afternoon to try and make some sense of all of the data that they have now collected, and make a plan for what to investigate next. We are also going to attempt to feed Carly again tomorrow, something that has not gone well the other three times we have tried. If she manages to eat without having extreme pain later in the day it is possible that whatever she has may have run its course. That is all that we are wishing for and dreaming about tonight.

Love, Brad

Up All Night

Today was a busy day for Carly and us. Just before bed last night she pulled out the breath holding trick and it wasn't ending quickly on its own. The nurse hit the call button and the doctors came running and had her breathing again in less than a minute, but it took more time than that for her parents to get their breath back. The rest of the night was heavy on the fussing and feeling generally uncomfortable for Carly and light on the sleeping for all of us. Her pain never escalated to a serious level but we got a total of 30 minutes of sleep none the less. At 7:15 she headed down to the operating room for her endoscopy which took less than an hour. The GI specialist, another Dr. Gupta, said that Carly's esophagus, stomach and upper small intestine were "beautiful." Of course they are, was all I could think. Although they took biopsy's that will need a few days to return, she does not think that there are any issues with Carly's upper GI system.

After the upper GI was more or less ruled out they decided to run additional testing on her lower GI system with a gastrointestinal fluoroscopy. They gave Carly a slurry of barium through her NG tube while watching real time images of her stomach and intestines as it passed through her. They then followed up with hourly x-ray images that just ended at 10 pm. We will get a report tomorrow which should tell whether or not they could detect a problem with any other area of her GI system. The entire family is pretty sleepy, and I'm hoping that a quiet night awaits.

Love, Brad

Searching For Answers

Carly had a pretty restless night and we were up until 6am trying to help her get comfortable. Her discomfort wasn't nearly as intense as her worst episodes but she is clearly still not feeling great. In the late morning the intensity of her discomfort started to escalate and we were afraid it might get to the ten out of ten level that it has on four occasions here. With Christa rocking her and me patting her we were able to help a bit, but she finally needed extra medications which fortunately helped her to rest.

Every day we shake our heads in disbelief when we count up how many days we have been in here. We're up to seventeen days now which makes this our longest stay ever, and we still don't know what is hurting Carly. Tomorrow at 7:30am she is heading down to the operating room for an upper gastrointestinal endoscopy. Because she is so young she will be under general anesthesia as they explore down her mouth into her stomach and upper intestinal tract. The procedure is quick, taking less than an hour, and hopefully they can get a better idea as to what is causing Carly to hurt so much. Christa and I are both sensing that a turn for the better is coming Carly's way, hopefully that starts tonight and doesn't let up.

Love, Brad

Here's To Dads

Carly had a much better day today. She had several naps that were an hour or longer which is something that she hasn't really done in the last two weeks. When she wasn't napping she was much more alert than we have seen since we came to the PICU sixteen days ago and she looked intently at both Christa and me many times over the day. Under the circumstances that is the best father's day present that I could have hoped for. We will probably feed Carly again tomorrow or Tuesday to see if it sets of another episode like she had two nights ago. Without a diagnosis it is unknown how this will go, hopefully she can move on and leave those painful episodes behind her.

We are on a run of holidays in the PICU having spent Christmas, Carly's birthday, Easter, my birthday and now Father's day here on the 6th floor at UCSF. It is certainly not where I would choose to spend these days, seeing Carly put through so much is the hardest part about it. Although it is not the fate I would have chosen for any of us, I still feel incredibly lucky to have Carly in my life. She is an amazing force that brings the best out of everyone that she touches and the world is a brighter place with her in it.

There are a lot of amazing fathers in this world that I would like to pay tribute to. I was fortunate enough to learn from one of the best, a real role model of what it means to be a dad and a husband. I may not have the same level of patience, or the same need to get to the airport so early, but I couldn't have had a better teacher to prepare me for this life than my own father. Also, there are a lot of dads that I see here in the hospital who have to deal with tougher circumstances than we do and their devotion is inspiring. And finally there are many dads out there, including my good friend Chris, who have lost their children and have the unthinkable job of being a father to a spirit. These dads are every bit the father figure that I am or hope to be and through their grief, the love for their children is inextinguishable. Cheers to all the dads out there.

Love, Brad

Right Back Where We Started From

We were ready for Carly to turn the corner, but unfortunately she turned the wrong one. Around midnight last night she was pretty uncomfortable, but we were still hopeful that she would settle into a good night’s rest. By 1am her discomfort escalated and continued through the night. They used strong pain medications intended to give a few hours of relief, but for Carly it only lasted about 20 minutes. By morning she had a fever around 102 F, and all of the doctors were puzzled once again. The neurology team visited this morning with a few ideas of medications that may be able to help Carly be more comfortable. These were changed during the day and although they said it could take a few days to notice a change, Carly has done better this afternoon.

Last night was very similar to the episode that brought us into the ER two weeks ago making it feel like we are right back where we started. We are doing our best to deal with having no idea what is making Carly feel so bad and no idea how long it could last, but it isn’t easy. Late this afternoon Christa and I were sitting on a chair together looking out of Carly’s window at a grove of eucalyptus trees. The wind was whipping though the trees and I was reminded of the wind power that we felt the day before and during her last surgery. We could feel the love and prayers coming our way that day, and I can feel them again today.

Love, Brad

Love Will Get You Home

I was really hoping that I would be writing about the great day Carly had, but unfortunately she had a tough one. She has been very unhappy most of the day and is still uninterested in nursing. The PH levels in her stomach were much more acidic than expected considering she has been on protonics or prevacid (medications that reduce the creation of stomach acids) for the last two weeks. This could definitely cause some pain so she is getting an antacid and we will see if that can at least give her some relief. It is still very unclear what else could be bothering her, but it must be something pretty intense judging from the volume of her crying. It seems like Carly takes two steps forward and then one back (and occasionally two back.) This is frustrating at times, but any progress is one step closer to home.

You can usually judge how well Carly is doing when she is in the hospital by how far away Christa and I are comfortable going. Over the last two weeks we have only walked around the block once, otherwise we haven’t ventured farther than crossing the street to eat lunch. Our usual lunch spot does have an amazing view though and gazing out over the Pacific Ocean and San Francisco always helps us re-energize for another day We told Carly tonight that the time has come to turn the corner and we will double our efforts in sending her the healing strength that she needs. We know that we can count on Team Carly to do the same.

Love, Brad

Mysterious Ways

Carly finally had the good night that we were all hoping she would have. She stirred a little, but was mostly quiet and we all slept as well as a family of three can in a small PICU room full of flashing lights and intermittent alarms. The sweet taste of sleep left Christa and I both wanting more.

Carly had a giant thirty minute outburst to start the day, but since then she has been very quiet and rested peacefully for almost the entire day. She never roused enough to try to nurse, so hopefully she can take that step tomorrow. It is looking more and more likely that this trip will end up being an unsolved mystery. A virus of some sort is the most likely candidate, but even that is not a sure thing. There is a chance we will be moved out of the PICU tomorrow if a room opens up, and the last thing that stands between us and home is getting Carly to eat without excessive stomach irritation. If she can do that, and we have a way to manage any remaining pain/discomfort that she may be having, then there is little left for the medical team to investigate. Carly would be allowed to recover in the comfort of home, only to return if her mystery illness "presents itself" which is medicalese for "gets worse and they finally figure out what is wrong." Christa and I are pretty sure that whatever it is will have run its course soon and Carly will be able to get back on her healing path. We're feeling all the love and support up here on the hill at UCSF. Thank you!

Love, Brad

Lean On Me

Last night was not the easy, restful night that we were looking for and neither was today. Carly just could not settle down and she seemed to be aching all over, with only a little relief from the pain medications. Christa and I managed to get maybe four, thirty minute naps over the night so our sleep debt is pretty impressive by this point. All of Carly's vital signs and key blood labs still look good, so although she is being put through the wringer she is holding strong and will fight this off. They switched her to a different medication that they hope will help ease her pain and as of now she looks more comfortable than she has all day.

These last twelve days have been incredibly challenging. We had no idea what was in store for Carly and us when we ran up to the ER on that Saturday morning and we are continually reminded that you never know what will be thrown your way. Thinking about how we are facing these challenges as a family I was reminded of these redwoods that we walked past on one of Carly's healing walks in Muir Woods. Two giant trees growing from one base that managed to catch a falling tree many years ago. All three thrive together, the two older trees supporting the younger and the younger tree defying the odds.

Love, Brad

Sleepy Time Time

Carly likes to make things interesting. She had another bad night, keeping Christa and I up most of the time with a lot of wincing and crying. Twice in the night she decided to cry so hard she held her breath and started to turn blue. She broke this trick out a few more times during the day, including once for my parents, once when a friend of ours was visiting, and once when the PICU attending doctor was evaluating her. That is more drama than a mom and dad need and we really hope she leaves this new trick at the hospital when we go home. We crammed in some sleep from 4-7am and then it was time for the various doctors to start checking in on her.

Carly's day was a lot better. All of the lab results continue to come back negative and her diagnosis remains unknown. One of the residents here in the PICU said that although this is frustrating for everyone, it is also a good thing because they always start by testing for the most serious possibilities. Carly's stomach pain seemed to lessen today and they removed a line that was running into an artery in her right arm. That had to be annoying her and it is nice to have one less tube to deal with when picking her up. She had a slight 101 F (38.3 C) fever today but otherwise she seems like she may be starting to turn the corner. Tomorrow Christa will try to nurse her again to see if her stomach can handle milk and we're hopeful that she will continue to feel better by the minute. Carly looks peaceful in this photo I just took and we really hope that will last through the night.

Love, Brad

Let's Get The Show On The Road

Just before we went to bed last night, Christa and I made six wishes for each of the tiny stars above Carly’s head. I am not the expert on the rules and regulations of wishes, but I think it is ok to reveal your wish after it comes true. Both of us wished that her 10 hour diaphragm spasm (big hiccups) would end as our first wish and for our second wish we wanted Carly to have a peaceful night's rest. Both came true! The other four wishes can't be far behind, but I’m keeping those to myself.

Unfortunately Carly's day was not as pain-free as her night and we needed to give her each dose of pain medication as soon as it was allowed. The pain lasted for the majority of the day but the intensity was not as bad as yesterday morning so we are hopeful that this is a trend toward pain free days in the near future. There is still no diagnosis, although pancreatitis was basically ruled out. They have started Carly back on slow, 1 teaspoon (5 ml) per hour feedings through her NG tube and we will see over the night if her stomach can tolerate this.

There is a saying that Christa and I like: "Worry is a negative prayer." There is no better time to remember that than now when our days are full of things that could make us worry. Instead of going down that path, we try our best to focus on the positives of the day and send this energy to Carly. If you can all take a moment to visualize Carly as the perfect being that she is, and do so anytime that you may worry about her, I know it will help carry her through this ordeal.

Love, Brad

Wishing On A Star

Carly had another bad round of pain from 3am-11am today. We did all we could to comfort her, and finally found a different pain medication combination that brought her some relief. Somehow she picked up hiccup breathing as the pain peaked in the early hours of the morning and these have stuck with her all day. The poor little thing can't seem to shake them.

Carly had another abdomen CT-scan with contrast that would help the doctors identify if there are any hidden issues that did not show up on earlier scans. The preliminary report is that she looks normal. While that is a relief it also leaves us back where we were a week ago with no better idea as to what the root cause of the problem is. A friend brought us some small origami stars that she folded called wishing stars that we have arranged in a colorful rainbow above Carly's head. We are all wishing for peace and a full recovery for our little angel.

Love, Brad

We Can Work It Out

Carly's day was better than yesterday mostly because we stayed up on her pain medications, helping to keep it from getting out of hand. The pain is definitely still there but fortunately there is something that we can do to help her through it. We are no closer to a diagnosis than we were yesterday, but like I said before, an official diagnosis is secondary to Carly getting better. Her ventricular drain that was inserted last Sunday was removed today because they have finally ruled out increased cranial pressure as the problem. This means that she continues to manage her CSF without a shunt. She is down to only seven tubes and wires which is certainly moving in the right direction.

I can't tell you how much Christa and I appreciate the love and support that is coming our way. We have spent a lot of time in the PICU over the last nine months, but this trip ranks at or near the top in terms of stress. The power of Team Carly (all of you) gives us a lot of strength and is keeping Carly safe as she heals.

Love, Brad

Whoa Nellie

We thought we had Carly's pain under control when I posted here last night, but shortly after posting, it returned. By 3am the pain escalated so far that she actually stopped breathing and the PICU doctors rushed in and used an oxygen mask to give her some positive pressure. Thankfully that worked almost immediately. There are no words to describe how scary that was.

Carly's abdominal pain has continued today and there is still no clear diagnosis. The current thinking is that it is pancreatitis or a very strong viral infection of her gastro-intestinal system. The treatment for either of those is the same: rest your belly (no eating), give IV fluids and manage pain with a variety of medications. There are a few other possible diagnoses, but those two are the best bet at this time. We think we finally have the right combination of medications to help Carly with the pain. Her feedings will be held until Monday, when they will be slowly introduced again. For now we will try to enjoy our view of San Francisco, keep the healing tunes playing, and give every ounce of energy that we have to helping Carly move on to better things.

Love, Brad

Looking For Answers

Carly's pain returned again today. It started with a little whimpering early in the day and got pretty intense over the last few hours, finally ending when she got two doses of a very strong narcotic. It isn't easy seeing her go through such an ordeal and it is a relief to see her rocking gently in Christa's arms now. After ruling out so many possibilities over the last week it seems that the cause is gastro-intestinal related because the pain issues didn't start up again until she started eating. It is still puzzling though, because her abdomen exam didn't uncover anything and the pain is too intense to simply be gas related. We're directing all of our energy toward helping Carly have a restful night and a pain free Friday.

Love, Brad

Steady As She Goes

Carly had another quiet day today. Although we would like to see her awake and smiling, it is a huge relief to see her so peaceful and pain free. Results from a variety of tests continue to come in and all have been negative so far (in this case negative is a good thing.) She still has a LOT of tubes and wires attached to her, twenty nine to be exact. This made it a little tricky moving her from her bed to Christa's lap, but as you can imagine it was worth it for both mom and daughter. Feedings have begun through a nasal-gastric (NG) tube which should be making her belly happy and hopefully will give her the energy she needs to take the next steps in her recovery.

Love, Brad

The Right Direction

Carly was taken off the ventilator this morning and is now breathing on her own. It is great to see her cute little mouth and cheeks that were hidden behind tape and tubing. She is starting to move around a little bit but still slept for all but a few minutes today. She has now gone over two days without a pain episode and we are hopeful that as she becomes more alert and starts eating tomorrow she will continue to be pain free. There is still no clear diagnosis for her and there is a possibilty that we will go home without one. We aren't too concerned about the diagnosis as long as Carly feels good and stays that way. We can feel the love from all of you helplng to carry us through these trying days, thank you!

Love, Brad

Many Questions, Few Answers

Carly made it through the day without a painful episode which was a big relief. She is still on a ventilator and slept for all but a few minutes of the day and she continues to sleep now. The cause of all of these issues is still a mystery, and specialists from nearly every discipline came to visit today. Carly is very popular around here.

If she has a good night they will take her off the ventilator tomorrow morning and hopefully let her try to eat. She hasn't eaten anything since Friday night so I'm sure she must be hungry. They will want to observe her for at least another day, but we haven't thought further ahead than that. One of Carly's nurses said it best today when she said "She looks like an angel." There's no question about that.

Love, Brad

High And Low

Carly's belly CT scan last night did not show any issues with her intestines or bowel, meaning that there wasn't any type of mechanical interference causing her pain. This was good news in that she would not need surgery, but her diagnosis remains a big question. She had a great night and rested peacefully and we were hoping that her cycle of pain was over. Unfortunately around 8am an episode began again and it lasted over three hours. Her temperature got very high and we basically found ourselves in the same situation as yesterday morning. They tried using a variety of pain medications to help her but nothing seemed to do the trick. In the end they put her back on a ventilator which allowed them to use stronger medications without worrying about her maintaining her breathing.

The team here at UCSF is still pretty stumped as to what is happening with Carly. They ran many tests today for a variety of possibilities and besides some signs that indicate a possible virus or infection, everything is looking pretty normal. There is still a chance that Carly simply has a very strong intestinal virus that is causing a cascade of issues. If this is the case she will need to ride it out and it will resolve on its own. They will run several additional tests tonight and tomorrow to help them narrow the possibilities and hopefully we will have a clearer picture soon. We appreciate all of the support that you are sending our way, it is a big help for Christa, Carly and me.

Love,

Brad

Unexpected

Carly's fussiness took a turn for the worse overnight and she woke up around 4 am in a lot of pain. We noticed that she had a slight fever so we gave her a hydrocortisone shot, something that we have been instructed to do anytime she has a fever. By 6 am she stopped yelling but she seemed very out of it so we ran her up to the emergency room. When they checked her temperature during admission it was up to 106.1 F and her heart rate was up to 230 ( it is normally closer to 120.) A group of 15 or more doctors and nurses rushed into action and they were able to get her stabilized. She was admitted back into the PICU, an all too familiar place for all of us, and she is now resting.

At this point they have been able to rule out the most serious issues that could have led to this. Neurological issues related to her resected tumor and shunt are not the culprit this time, and it is looking like it is probably related to some type of GI issue. She will have a stomach CT-scan this evening to see if there are any intestinal complications, otherwise it could possibly be a stomach virus that combined with her panhypopituitarism pushed her body too hard. It is a relief to see her feeling so much better already, and we’re hopeful that she will be able to get out of here in just a few days.

Love, Brad

Don't Cry My Little Darlin'

Carly hasn't had the best week. Early in the week she started waking up screaming in the middle of the night and it took several hours to totally settle her down. This has kept up every night since and now happens several times during the day as well. She was upset enough on Wednesday to be taken up to urgent care for an exam. The trick is that it could be normal kid issues like teething or stomach pain, it could be an endocrine issue due to her panhypopituitarism or it could be a neurological issue. Because there are so many possibilities the urgent care visit took most of the day for head and abdomen ultrasounds, blood labs, urine tests and more. Fortunately all of the test results looked normal and Carly was sent home, but she is still clearly not feeling well. We are thankful that it wasn't something serious enough to land back in the hospital again, but it is still sad to see Carly in pain. Hopefully whatever it is passes in a few days, in the meantime we will cuddle her and give her all the love we can.

Love, Brad