The PICC Line

We were discharged from the hospital while Eden was still getting a couple different antibiotics through her PICC line. It was a pretty cool administration system that I had never seen before. Inside this ball was the medication and it was already preset to give her the dose she needed. One of the antiobiotics needed to be hooked up continuously so the only time we unhooked it was when I had to put the second antiobiotic on the line twice a day. The problem was that she had to have a ball of medication attached to her 24 hours a day. It very quickly became a huge hassle to try to hold it and follow her around so we had to get creative with ideas to attach it to her so she could carry it.



Eventually we were able to get her a little backpack which ended up working out the best. In the meantime though, she was a champ at wearing it in a net and pinning it to her shirt. She is so cooperative when it comes to these types of things which is such a blessing!

Hospital Pictures

We were discharged from the hospital yesterday afternoon!! YAY!! We have returned to my mom's house where she is helping out with everything so I can try to be off my feet as much as possible. We are all so grateful to be out of the hospital.

Eden still has her PIC line and she is on 2 antibiotics that I have to switch a couple times a day. 24 hours a day though she is hooked up to one or the other so we have been keeping an extra eye on her everywhere she goes to make sure her PIC isn't getting pulled out or the antibiotic line getting snagged on anything. It's just killing her to not be able to help wash dishes or play in water, but we have to keep the line dressing dry and clean for just a couple more days. Hopefully her antibiotics will be finished, and her PIC line will be able to come out this Friday. Overall she has been so good about leaving it alone and accepting that a line and ball of medication has to go wherever she goes.

It still just amazes me and makes me so happy that we were able to leave the hospital without getting a new shunt back in. I was so extremely discouraged last week when we got the initial news for so many reasons, but one major one being that we were just coming up on the one year anniversary of getting the shunt in the first place, and now it was looking like we were going to have to redo the whole thing.

This is January 27, 2011 on the day after her shunt was placed.


And here is a current picture, taken January 18th, the day after her shunt was taken out.


Fortunately, we had an awesome nurse that became the advocate for Eden's hair. I told her they shocked us last time by the amount of hair they shaved off so she stuck up for us in the operating room and didn't let them shave off any more than they had too. Thank goodness for her. We didn't want to lose these beautiful locks again... :)


Overall Eden did so well with the 8 days we were in the hospital. The first few post surgery days were rough, but then she was feeling pretty well and it just became a matter of keeping her entertained while we waited to be discharged. I wasn't able to post pictures from my IPad at the hospital, so here are some random pictures from the week's activities:

Spiritual Blessings in the Midst of Physical Trials

Eden has been through a lot in the last two and a half years. I can't even begin to count how many hospital stays we have had, and how many tears have been shed as I try to comfort her through everything. I can't imagine there's any worse pain I will ever feel in my life than what I feel as I helplessly watch her struggle through the fear and pain she feels as her body tries to recover from several very hard surgeries she has faced.

My emotions about all the health trials we have received seem to fluctuate and it seems that with every new challenge we have faced, I've needed at least one day to be overwhelmed by it. I need a day to cry, and let the frustration and despair overcome me. And though I try to keep each "problem" separate, each new medical issue we face just brings back all the pain and saddness from the whole journey and the "unfairness" of all Eden has had to suffer since her birth. Once that "mourning" day is over though, I have to pick myself back up and carry on so I can be strong for Eden.

I always dread the moment I am reuinted with her in recovery after a surgery though. I struggle to keep my own emotions in check as I see the pain and fear in her eyes. I do everything I can to stay strong for her, but can't help but let the emotion overcome me when she isn't looking. It is a pain in my heart like I've never felt in any other situation.

Eden is so absolutely amazing though. I know there is no possible way that she has been able to deal with these things on her own. I have found great comfort in knowing that she has been given tremendous comfort and blessings from Heaven as she overcomes all she has been given.

March 2011 Eden had her airway reconstructive surgery and they had to take rib cartilage to use in the airway. Because they had to cut through muscle and remove a couple ribs, this by far was the absolute most painful and worst recovery for Eden. She struggled through this one like I've never seen her struggle before. We did all we could to keep her on the srongest and best pain medication, as often as we could, but for the first few days at least, we could see she was trying to be happy and play despite the extreme pain and discomfort she was still experiencing.

Not long after we were home and the worst of the recovery was behind us, we were watching the April 2011 General Conference and there was a talk given by Kent F. Richards titled, "The Atonement Covers All Pain". Rather than try do my best to reword what he said, I thought I'd copy and paste a part of his talk that really touched me.....

As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.” All that will come may be “clasped in the arms of Jesus.” All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.” Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm.

I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones.

Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, … and … Grandpa Norman … and Grandma Brown … are here. And Daddy, who is that standing beside you? … He looks like you, only taller. … He says he’s your brother, Jimmy.” Her uncle Jimmy had died at age 13 of cystic fibrosis.

“For nearly an hour, Sherrie … described her visitors, all deceased family members. Exhausted, she then fell asleep.”

Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.”

As I was hearing this talk, emotion overcame me and the spirit testified so strongly to me that this is true and that Eden has been "healed" by giving her the strength and patience she needs to endure. I also know that she has most definitely had help from guardian angels during her recoveries.

I couldn't help but reflect on all we had just recently been through with her horribly painful recovery and I know without a shadow of a doubt that there is no way she was able to get through that on her own. I distinctly remember times when she was in the hospital that she would look over my shoulder and smile and just be at peace despite the pain she was feeling.

This past week has also brought some experiences with Eden that has again testified to me that this is true. The day after Eden's surgery on Tuesday, she was laying down watching a movie and out of nowhere she turned her head up towards the ceiling, got a huge smile and began signing and babbling to something neither Brad or I could see. She seemed to carry on a conversation for a few minutes then turned back over and continued watching her movie.

Just a couple days ago, Brad shared another experience he witnessed after I had left the hospital for the night. I'll repost his words directly....

Tonight as we settled down to fall asleep, Eden looked up to the air to the left of bed as we lay there together. She smiled, got really excited, and started "talking". She signed and spoke "stay" and "2" meaning 2 minutes, meaning stay longer than just a little bit. She smiled, nodded, and spoke some gibberish--all looking at the same empty space about 6 feet above the bed. This carried on for a few minutes before I inquired, "What do you see?"

She replied in her horse trach voice, "yellow."

"Yellow what?" I questioned. She pointed to her hair.

"Yellow hair?"

"Yes."

"Is it a boy or a girl?"

"Boy." She said through her trach.

"Is he big or small?" Small, she signed.

"What's his name?" Mommy, tummy, she signed.

"Is it mommy's baby?"

"Yes."

And then she stopped looking up and got distracted by her blanket.


Some may choose to believe that she is just imagining and playing like lots of kids do, but I have never seen her do stuff like this except when we are in the hospital. I believe very strongly that the veil is thin and that Eden has indeed been visited by spirits on the other side to help her feel peace and comfort as she recovers.

In my weakest moments, sometimes it's hard to fight off the feelings of "it's not fair" and "Heavenly Father could just intervene and make her body be healthy, why isn't he helping her". I've heard the following saying so much, "Heavenly Father doesn't give us more than we can handle". I believe though it's not about Heavenly Father giving us what we can handle, but that Heavenly Father helps us handle what we have been given.

We have been extremely blessed throughout these medical trials. Eden has had her fair share of problems and struggles, but she has also avoided so many more aflictions that we haven't had to deal with. I know without a doubt that Heavenly Father has intervened more times than I can count to help protect and heal Eden. Though it hasn't made the recoveries painless and easy, Eden has been blessed and comforted in a way that made her able to cope and deal so well with all she has been through.

When I stop and reflect on these things, it seems so silly that I even need one day to cry and feel sorry for the circumstances we are in. I know it's normal though, and of course I will always feel sad for Eden, but I have no reason to dwell on the negative aspects because there are so many more positive ones.

Medication Overdose

We need to get out of this hospital... for several reasons really, but mostly because the longer we are here, the more vulnerable we are to human error. Everyone makes mistakes, but when the mistakes can potentially cause long term harm (especially to your child), it's hard to not be extremely upset.

Yesterday morning a doctor came to us and said that the previous night, Eden received a big overdose of one of her antibiotics Vancomycin. He said at the time he wasn't exactly sure how or why it happened, or who was necessarily responsible, but Eden's medication was swapped with another child's and she was given quite a bit more than what she should have received.

He explained that they would have to do blood draws and check her kidneys to make sure they were able to process that amount of medication ok. There was potential for some serious damage to her kidneys.

As you can imagine, I was very upset hearing this information, but by the time he was explaining it, about 12 hours had passed, she seemed ok, and frankly, there was absolutely nothing we could do about it and getting upset wasn't going to change what happened. I just felt that we would have to await results from the lab about her kidneys and deal with it at that point if we had to.

Fortunately, we got a call a couple hours later that the results came back with good news and her kidneys looked like they had processed it fine. In fact, the levels for that particular antibiotic came back low altogether so it appears her body metabolizes it quickly. Thank goodness for that or else we may have been dealing with kidney issues now too.

We are grateful for yet another answer to our prayers. Phew.... another crisis averted. It might be easy sometimes to let the discouragement take over with all that we have had on our plate, but the discouragement doesn't last long when I realize how much we have been blessed and how much Eden has been protected throughout all our medical adventures.

Eden Update, and Pregnancy Update too!

Eden has been doing so good since the last update. She still has the drain tube in her head, and though it looks pretty painful, she has been completely off all pain medications for a few days now and doesn't seem to be bothered by any pain at all. It's a huge blessing to know that she is not constantly dealing with the pain in her head.

With that being said though, she isn't completely out of pain all the time. She had one IV in each foot, and gratefully those are both out, but her feet are both covered in big bruises and painful sores. She got a PIC line placed in her arm now which we are grateful for so we could be done with the IVs altogether.

They have also had to draw blood which never seems to work well the first time so it takes a couple attempts. It's always quite traumatic.

Through it all through she is such a trooper. Aside from the occasional bad stuff, she is overall so happy and just charming the pants off everyone here at the hospital. All the nurses wave to her as they walk by and we get told very often how happy and cute she is. I guess I've never really thought about it much, but it must be refreshing and nice for the nurses here to interact with a child who is so happy and funny. After seeing some of the other children here, I can imagine they don't come across happy, cooperative children very often. She is such an amazing little girl.

The best news of all is that over the last couple days they have clamped off her CSF drain and have been monitoring the pressure levels in her head. She has maintained very low pressures which means we are most likely going to be able to avoid getting a new shunt placed! We have prayed so hard this would be the case, and still have some guards up because we aren't totally out of the clear yet, but it's looking more and more like she will no longer need a shunt.

They will continue to monitor pressures over the weekend, and continue to watch her lab cultures from the infection to make sure they continue to be negative. If all still looks good by Monday, we will most likely be discharged shunt free, avoiding another painful procedure and recovery, and with her hair still mostly unshaved! YAY!!

For the next couple months they will continue to watch her closely with eye exams and possibly lumbar punctures to make sure the pressure stays at a safe level, but chances are low that if she does well over the weekend, that it will begin to have problems again later on. We feel so very blessed and excited about the possibility that we won't ever have to deal with the shunt and all it's complications anymore.

We are so grateful for all the love, support, homecooked meals, and especially the prayers offered in Eden's behalf. We can't thank you all enough.

As far as the pregnancy goes, I had another ultrasound Thursday to measure my cervical length. It wasn't great news, but everything is still ok. At my last ultrasound my cervical length was about 4 with just a little funneling, but when I went in on Thursday, the length was only 2.8 which is a pretty big change for such a short amount of time. They had always told me all along that it wasn't really a concern until it got between 2 and 3, so I guess now it's officially a concern. It doesn't necessarily mean I'll be going into labor soon though, sometimes it can be normal. They just want to continue to watch it closely to make sure it doesn't continue to thin, especially at such a fast pace. I'll have another ultrasound in two weeks and in the meantime I just have to try to continue my "modified bedrest" and watch for any new warning signs.

As far as good news though, tomorrow I'll be 28 weeks which means we have already make it farther than we did with Eden! Every week now brings experiences with pregnancy I've never had before, and better chances that our baby is going to be more healthy. We are definitely focusing on these aspects and continue to pray that we have lots more weeks of pregnancy to celebrate.

Brain Shunt Infection

The short story of our current trial is that we found out Monday morning that Eden's brain shunt was infected. The only way to effectively and quickly treat a shunt infection is to remove the shunt completely, kill off the infection and then replace the shunt. So Monday morning when the nurse practitioner called to tell me the news of the infection, she also said we would need to be admitted to the hospital that night for the shunt removal procedure Tuesday morning (yesterday). That was definitely a fast twist to what we thought was going to be an uneventful week.

The procedure went smoothly and the shunt is now out. Currently there is a drain tube coming out of her head where the shunt used to be which is relieving excess CSF pressure and some blood from the procedure. Since leaving the operating room, she has been on heavy course of a few different antibiotics to begin killing the infection.

The recovery thus far has been rough, but she is already doing better this morning. Every day gets a little easier. At this point we are taking it a day at a time, but know we are looking at quite a while in the hospital. We have to get the infection killed and get clear lab tests for at least 7 days before they will replace the shunt. We are somewhat settling in here at the hospital as best we can.

So that's the short version, for anyone interested in the details, here's the long version and how this all came about.... I warn you, it's complicated.

Back in October Eden was admitted to the hospital through the ER because she was having intense stomach pains and was saying the pain was coming from the area right where the brain shunt catheter ran through her abdomen. At that time they did a shunt tap to check pressure and CSF for an infection and everything came back clear. She didn't have an infection at the time, and we never did figure out what was the source of the pain she was in. The abdominal pains got better, but from time to time Eden continued to complain that her stomach hurt.

Fast forward two months to December. We were in for another routine eye exam and Eden's eye doc thought the swelling in her optic nerves was high again. She decided to go ahead and do an ultrasound of Eden's eyes to check for calcium. When she did the ultrasounds she thought she saw calcium in both eyes. She explained that the calcium wasn't necessarily a bad thing, but sometimes when looking at the optic nerves they can appear to be swollen, or more swollen than they really are, because the calcium reflects light and can make it look worse. At this point she thought her optic nerves were still a little swollen, because based on her notes from previous eye exams, she has seen that her eyes have looked better, but now that they found calcium, she isn't sure how bad the swelling really is.

So based in those results, she thought it was best to send her notes and a recommendation to the neurosurgery team to check out the settings of the shunt again to verify that the shunt was working properly. We scheduled the appointment for a shunt check for early January.

In the meantime, the shunt catheter we see on Eden's abdomen was starting to look puffy and a little swollen. I called the neurosurgeon nurse practitioner to get her opinion about it and she felt it would be best to get it looked at right away through the urgent care, and we would go ahead and do all the other shunt tests at that point too.

Based on an MRI and X-rays, everything related to the shunt looked really good and like it was working just as it should. Her brain ventricles looked perfect, not swollen or like they were under any excess pressure. The shunt catheter also looked good, no kinks or twists or any problems there. At that point, they felt the puffy catheter wasn't an issue because the images all looked good, she wasn't exhibiting a single symptom of a shunt infection, and there was no reason to be concerned. Just to follow up though, they decided to keep the appointment in early January to check the catheter and see if the puffiness was resolving.

So this brings us to last week. The puffiness of the catheter looked a little better, but was still not normal looking. We also still had the issue of why her optic nerves appeared to be swollen if the imaging of her brain looked good. They decided to do a shunt tap which is a way to check the pressure to know for sure whether or not she was draining properly (even though it looked like she was). At that point, since they already had a needle in the shunt, they decided to just extract some cerebral spinal fluid to send off to the lab. And this is how the infection was discovered. It came back positive, but left the team puzzled because she wasn't exhibiting any outward symptoms, and her blood cell count and glucose also didn't exhibit the typical trends seen when the body is fighting an infection. So because of this, they did a second shunt tap last Friday just to confirm, and it too came back positive for infection.

So here we are, all still a little puzzled and shocked by what has transpired over the last two weeks. The type of bacteria they found is not a typical bacteria that causes infection in a shunt. They had to get an infectious disease doctor on board to identify this bacteria and help determine the best way to kill it. This type of bacteria is apparently found in the normal flora in the upper respiratory mucosa, urogenital tract, and gastrointestinal tract. So though they don't know for sure, they are assuming the puffiness of the catheter is related, and that this bacteria came from the gastrointestinal tract and infected the shunt from the end of the catheter up. Typical shunt infections occur from interference with the shunt from the top, like a shunt tap for example, but nothing about Eden's case is typical.

Right now they have her on 3 hard core antibiotics because they don't know yet what this bacteria is sensitive to. The infectious doctors are working on it though and hopefully in a day or two we can reduce the antibiotics to treat it more specifically.

They take a sample of cerebral spinal fluid daily to track the infection so they know as soon as it is gone. Once lab results come back clear, they will typically wait 7 days and then replace the shunt.

In the meantime, I'm pushing to get a second opinion on her optic nerves. I don't understand how her MRI can look good, and the pressure can be normal, yet her doc is still reporting that her optic nerves are swollen. Part of me wonders even more now how much the calcium is playing into this, and whether they were really even swollen at all. We will see what we can find out there.

Oh Eden, her body is trying so hard, but she continues to baffle medical teams and raise questions all over the board. Her body continues to exhibit lots of mysterious complications which we unfortunately are not surprised by. However, like the many road bumps in our medical past, we will overcome this one too. Eden never ceases to amaze me with her strength and patience to get through these things. I know she has heavenly help to deal with all that she is facing. She is one amazing little girl and I can't even begin to explain how much I love her.

Pregnancy Update

This picture was taken Dec. 31st, I was 25 weeks along. The following day we were at the hospital in OB Triage for pre-term labor issues. All throughout the morning I was bleeding, and then by that afternoon I was having contractions about every hour. We decided that we needed to go in and get everything checked out because if I was in labor, I wanted to have a better chance of stopping it early.

When we first got there, they did an FFN test which can predict if you're likely to go into labor in the next 2 weeks. While waiting for the results, they had me hooked up to monitor contractions, and they also checked to see if I was dialating. Fortunately, my cervix was still closed and the FFN came back negative. It was all good news, but they recommended I begin a modified bedrest to hopefully help the contractions to stop.

The following week, Sunday the 8th, we were back in OB Triage because I was having tons of contractions, up to 3 per hour. The contractions feel just as I remember them when we went into the hospital with Eden, except in her case, by the time we got to the hospital and they checked me I was already dialated to 5cm and there was no stopping it at that point. So even though I was feeling fine, when we called the doctor and told them I was contracting 3 times an hour, they felt it was best we head back in to ensure everything was still ok. Again I was sent home with good news, that despite the continuous contractions, my cervix was still closed.

So even though I've been on modified bedrest, and drinking tons of water, the contractions are still coming every day, but are not as regular and consistent as they were. At this point, I'm focusing more on whether they start to change, or get more painful, rather than just the frequency because so far the frequency hasn't actually affected anything. It definitely adds a little anxiety because I just don't want to miss the signs I should be aware of.

So here we are today, I'm currently 27 weeks which is the week in the pregnancy that I had Eden. I'm so happy we have made it to this point, despite the complications we have already faced. I can't begin to express my gratitude for my parents, especially my mom because they have done so much for us to help with Eden so that I can stay off my feet as much as possible. Brad has been amazing too and has balanced his career with taking care of so much in the evenings when he gets home. I feel so helpless most the time, but know that this is temporary and the best thing I can do to help get our baby boy here safely.