Surgery Rescheduleld

Sorry for the couple of days hiatus on posting to the blog. Isabelle wouldn't let me out of her sight without screaming so hard her oxygen saturation levels would drop. Going to the computer room at the hospital to update was out of the question!

Phil traveled back home on Wednesday p.m. Isabelle stayed in PCICU until Thursday and then was moved to the step-down unit.

As an aside...MUSC is specially equipped to handle pediatric cardiac patients. In addition to having an PCICU that has 12 beds and is dedicated solely to pediatric heart patients, they also have a step-down floor which is dedicated to peds cardiac patients. This floor has a telemetry system so each child's EKG readings, oxygen levels, etc. feed straight into the nurses' station. This attention to medical detail is the reason we're at MUSC.

On Thursday we received word that Isabelle's heart surgeon was scheduled for Monday. However, on Friday, Dr. Bradley had an emergency heart surgery which bumped all his other surgeries back. Many heart surgeries take all day and the others take 3-4 hours, so Dr. Bradley can only operate on one or two children a day. While we were in PCICU he had 2 unexpected emergency surgeries. You can image what this does to his surgical schedule.

We are now scheduled for a Thursday surgical date with Wednesday all day pre-op labs. They gave us the choice of staying in the hospital until the surgery or returning home for a few days. Isabelle is stable on 3 liters of oxygen, so we opted to travel home.

Phil and the girls (Michaela, AnnaGrace and Sarah Mei) were troopers. They drove to Charleston (4 hours) Friday afternoon to pick us up. We intended to stay in Charleston overnight and then make the trek back. When we called the hotels they were ALL booked. You may have read about the cruise ship with the stomach virus?? The cruise line booked 500 hotel rooms for all their sick passengers. Needless to say, we didn't want to stay in Charleston to get exposed to that bug. Instead we drove 2 hours to Orangeburg where we spent the night.

After some careful deliberation we decided to go on a "field trip" to the Columbia zoo. We held Isabelle the whole time (oxygen tank in-tow) and spent 2 hours seeing our favorite animals. It's a balancing act when you have a critical child...keeping them safe and healthy while keeping your other children sane:) The girls REALLY enjoyed the 1st diversion since Isabelle has been on U.S. soil.



Life is a little complicated for us right now. I have a history of seizures but have been seizure-free on meds for over 9 years. However, while in China, I had a seizure. We were in Isabelle's province where the altitude was about 7,000 feet above sea level. That, combined with the fatigue that comes with international travel, was more than my system could handle. It was quite scary. I'm deathly allergic to the 2 most common meds to treat seizures. Those meds would have been the 1st line of treatment had I been taken to a Chinese hospital. But in God's providence, their was a wonderful American Dr. in the province where Isabelle lived. He was on "back-up" for me if I had any further issues which praise God I didn't. All of this is a long story to say I can't drive right now until my system gets back on an even keel. This has added an extra component to all these trips to Charleston since Phil has to drive me everywhere.

To add to all the other challenges, Sarah Mei now has a stomach bug which we're praying we can keep isolated to just her.

Despite all the obstacles, I can truly say we're not discouraged. At times we're physically exhausted but the Lord is sustaining us emotionally. We stand in awe that we serve such an awesome, awe-inspiring, personal God.

"It is good to praise the Lord and make music to your name, O Most High, to proclaim Your love in the morning and your faithfulness at night." Ps. 92:1,2

Although I couldn't get out to the computer, I had Phil's Blackberry and I could read every message you left on the blog. The Lord is using the Body of Christ to encourage us and uphold us during this time in our lives. Your prayers and words of encouragement mean SO much to us. We are blessed by all you!!


(We enjoyed visiting Aslan. We are big Narnia fans and this lion reminded us of Aslan!)

Wed. a.m. Update

The Dr.'s were finally able to extubate Isabelle at about 3:00 a.m. this morning. She really fought waking up and kept dropping her O2 levels. She's now on minimum pain meds and her SAT's are stable at the low-70's. Please pray for a surgical slot to open in Dr. Bradley's schedule by the beginning of the week.

We are waiting until this afternoon to decide whether Isabelle will come home for a few days or just stay in the hospital until her surgery. The decision will depend on how stable her SAT's stay once off all pain meds and also when she can get on the surgical schedule.

Please continue to pray for God's timing in all of this. We are SO encouraged by your prayers and comments. We feel the hand of God on us as we walk this road.

Cath Update - Isabelle

It's 2:20 p.m., and Isabelle spent 4 hours in the cath lab this morning. It was much longer than any of us anticipated. She has significant narrowing of the arteries on the right side of her heart. They spent time trying to get the cath through but there was just not enough room. They were able to check the pressures in her lungs. They are at 20%...ideal would be 15% or lower but the cath Dr. feels that the surgeon will still do the open-heart surgery with these numbers. Isabelle will likely have more drainage due to the lung pressures...i.e. a longer hospital stay after her open-heart surgery but we're praising God that surgery will be an option.

She is still intubated and has been in PCICU this afternoon. They just took her down for an angio to get more information on her lung vessel system since they couldn't get it with the cath. She should be returning to PCICU in about 15 minutes, when happily!!, I'll get to rejoin her. She will likely stay intubated until this evening. She is completely sedated and doesn't know I'm in the room but it does my "mommy heart" good to be there with her.

Please pray that the heart surgeon, PCICU attending and cath Dr. can coordinate their schedules this afternoon for a meeting to map-out the surgical course for Isabelle. There's a strong chance that Isabelle will just stay in the PCICU until her open-heart surgery. The sooner the surgery the better as far as we're concerned!

Her SAT's are only in the 80's even on 100% oxygen. Once again the Dr.'s are amazed at how well she has done for so long with so little oxygen. I pray that this will be another chance for the Dr.'s, nurses, and other medical staff to the see the Lord's hand in this little life.

We appreciate all the prayers and will try to update the blog several times a day.

(Excuse all the medical stats but I use this as my own medical diary too.)

Isabelle - Health Update & Prayer Request

Last night was a night of little sleep. Isabelle's oxygen levels dropped to the low-50's (she "lives" in the low-60's usually), and her pulse went to the 140's (normal for her is the 120's). Despite her low #'s, she was still playing and eating normally although she was a little fussy. Several weeks ago our pediatric cardiologists advised us that her behavior is more important in diagnosing distress than her numbers, so we went to sleep hoping that rest would help her. Thankfully I put her to sleep next to me in our bed. In the middle of the night she started having apnea episodes. She'd stop breathing; I'd move her gently; She'd start breathing again. Needless to say, from that point on I didn't sleep.

This morning we called the cardiologist, and they told us to bring her to the office. When we arrived her oxygen levels had fallen to the high 40's, and she was definitely getting blue. They immediately started her on oxygen. Thankfully her SAT's went right back up to the low-60's...her "normal."

After an echo, to assure that she wasn't going into congestive heart failure, and a chest x-ray to rule out pneumonia, the cardiologist confirmed that she has RSV. Our options were to hospitalize her and put her on oxygen. The downside...the hospital here has the Rotovirus circulating and exposing her to that is NOT we need to do. So instead our cardiologist arranged for us to have oxygen in our home until we go to MUSC on Tuesday.

I'm praising God for Isabelle's fighting spirit. You can't even tell she's sick other than the fact she wants to be held more. And I'm also SO thankful for godly pediatric cardiologists and their office staff who treat each of their patients as if they were family! I can't say enough about Dr. Craig Greene, Dr. Bill Hammill and Dr. Ohmstead at Pediatric Cardiologists!! You guys are the BEST!!

Now we're home and Isabelle is sporting her new apparatus. She's completely unfazed by the oxygen except when she tries to walk more than 4 feet from the unit at which point she realizes she is tethered.



Please pray that Isabelle will not get worse. RSV peaks on day 5 and we are on probably only on Day 2. Also pray that she'll be symptom-free by Tuesday, so they will be able to do the cath at MUSC. Following the cath, the Dr.'s anticipate being able to lay-out a game-plan for her upcoming open-heart surgeries. We'd really love to get the first one behind us!

We continue to be at peace with the whole situation which is only the Lord! We are SO thankful to serve an awesome God who holds our hand every step of the way.

Isabelle - Medical Update

We went to our pediatric cardiologist last Monday. Isabelle was somewhat cooperative but wasn't still enough for them to get complete details on her echo. We do know that she has a single ventricle defect as suspected. Unfortunately we don't know if her low SAT's (oxygen levels) are from pulmonary stenosis or a pulmonary artery blockage.

We are scheduled to go to MUSC on Tuesday,February 23rd for a catherization and a 3-D echo. Isabelle will be under general anesthesia for these procedures, so please pray for no complications. The results of the cath will give us direction as to the next steps needed. If she has blockage, open-heart surgery may not be an option. We haven't discussed that possibility much, but I think a heart/lung transplant will be the only option if there s blockage. We are praying for stenosis which means a 2 phase open-heart surgery will be a possibility. She would have the 1st surgery, the Glenn procedure, done quickly and then the 2nd surgery, the Fontan, done in a couple of years.

We have such a peace about the whole process. We were disappointed with the delayed cath date, but it ended up being a blessing. Isabelle caught a cold from one of us and is still trying to get over it. Alas...God's timing IS perfect:)

When we started the process for Isabelle the Lord impressed upon my heart this verse:

"...All the days ordained for me were written in your book before one of them came to be." Ps. 139:16

We know the Lord is in charge of each of our lives including Isabelle's.

I continue to be overwhelmed with the Lord's graciousness to me. As my mom reminds me, "You're the one (in my early 20's) that said I'm never getting married and if I do I'm NEVER having children." I thought I wanted a career and independence. God's plan is SO much better. I love being a mom and am SO thankful that He's given me a chance to love another one of His children. I am TRULY blessed!!

We're Home!!

We arrived back in the states around 9:00 p.m. Friday evening. Since then we've been spending time by the fire, celebrating Sarah Mei's 4th birthday and trying to get our body clocks back on U.S. time (China is 13 hours ahead of us!)

Isabelle is adjusting amazingly well and is already "training" her daddy. Her sleeping is good except for the fact that she wakes up bright and early at 4 a.m....ugh! I'm sure all of our sleep schedules will get straightened out in the next week or two.

Our trip to China was a great experience for Torie and Michaela. It was Michaela's first time traveling overseas since she was six. Because I was isolated in the hotel rooms, Torie had to show Michaela the ropes of bartering at stores, navigating the streets in a foreign country (in China they DO NOT yield to pedestrians so it's an art to walk around there), and which foods were safe to eat. Following is a photo of live scorpions that you could pick out for your lunch...Torie didn't even have to tell Michaela those were a "no" for a main dish.

The girls went to walking parks, a shopping mall and of course Starbucks!!

We spent our last days in Guangzhou, China where all U.S. families must go to finalize their adoptions and be sworn-in as their child's parents. We stayed in the White Swan hotel which caters to adoptive families. It's a beautiful hotel and even has an inside waterfall.



In previous trips, we've always counted down the days to get to Guangzhou because Lucy's, an American restaurant, is close by. This time I found that I loved the Chinese food so much that I grew tired of Lucy's and was excited when I finally got to make an outing to a Chinese restaurant!

The last 2 days I actually left the hotel room for the first times. We spent a few hours shopping on Shaiman Island, where the White Swan is located. On Friday we went to the zoo...which for the record doesn't even come close to the San Diego zoo as someone had told me...but which was still a fun outing.

We are so blessed to have such a prayer team, in you, who prayed us through the whole trip. Please continue to pray as our 1st visit to the cardiologist, yesterday, left us with many questions. We will be going to Charleston for a catherization to see if Isabelle's lung pressures are healthy enough for a heart surgery and also to get a comprehensive echo on her heart. In the States this sort of defect is corrected within a child's 1st week of life. Isabelle's heart has made some adaptations which have kept her alive this long but pose some unique surgical challenges. We are at total peace that the Lord is in charge of it all but would appreciate your prayers for wisdom for the Drs. as they assess the situation.