9/20 surgery update

Angel had a rough day on Friday the 20th. The scheduled surgery happened, but Angel was very uncomfortable for the following two days. Pamela said she cried a lot which is unusual for her. It is obviously very hard for Pamela too. She said she aches inside as she tries to soothe her daughter.

This last surgery did three things. 1) The left eye lid was re-grafted. It had not yet been successfully attached, but they believe after this surgery it will be.  2) There were also two spots on the skull that needed more skin.  3) A new area was also addressed. The skin on Angel’s cheek has been so badly scarred that it has pulled the mouth off center. The medical staff calls it a contracted site. So they cut the cheek and added skin to it to help the mouth become less pulled. They then put on a stretchy bandage that pulls on the skin to put it in place. I am guessing that this is what was painful for Angel.

But both Angel and Pamela are quick to be positive. By Sunday, Pamela says that Angel was smiling again and feeling bouncy. She tried some new solid baby foods and liked them…apples and carrots. She was very clear however that she did not like the jar of beef. I told Pamela that it was obvious that Angel was a vegetarian in the making. Pamela thinks she might do the same because she loves American veggies!

Pamela also wants me to convey how grateful she is for the visits and the phone calls and the sense of friendship that surrounds her.

But that sense of belonging to one another no matter who we are has only been heightened by the tragedy in Nairobi. Those who have been killed, injured, traumatized by the horrendous event in the mall are also our brothers and sisters. They too need us to surround them with our prayers and love. They too are our family and surely we ache as they ache.

We are one in the Spirit.

~ Sue

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Ubuntu

Angel is having another surgery on Friday the 20th at 7:30 am. Her left eyelid is still not doing what it is suppose to do and there is a 1″ spot on her skull that has not accepted the newest graft. Head and eyelids continue to be the major concern. Everything else is on hold until those areas are successfully completed.

There is some other news that is fun to think about. The doctors have told Pamela that once the skull has skin in place, they will attempt to graft in some of Angel’s own hair. For Pamela that is very exciting. She has worried about how a child would feel about not having hair and it seems that Angel may in fact be able to grow her own.

There is however a growing reality for Pamela that this process is long and complicated and life in the Burn Center is not easy. For example, Pamela is a very social person and she comes from a culture that values being community far more than it values being an individual. So to wait for a surgery to be over by herself or to face a day alone with all of its twists and turns is agonizing for Pamela. She is, like most Kenyasn, relationally based and very unsure of herself when she feels alone. This means that she is very grateful for each and every friend that has embraced her on this journey because she is simply out of sync without people sharing the experience with her.

There is a Swahili word that encompasses this feeling for Africans and it is “ubuntu”. It means “I am because we are.” There is no life for Kenyans without the “we”. Thank you for being Pamela’s and Angel’s ‘we’.

All of this became very clear to me when Pamela was given two new roommates who could not speak Eanglish and who did not seem willing to try to communicate with Pamela in any way. Pamela became most upset. She did not understand how she could share a room with women who did not want to talk to her. She agonized for days about it and finally relied on prayer to solve the problem. After two days and many attempts by Pamela, the wall cracked and there was some exchanges. Now I am told they laughed a lot last night as Pamela took their photos with the camera Scott Brown gave her. Thank you, Scott, for the gift that allowed for these fragile friendships to grow.

The other comment that Pamela made today was that Angel is acting like a “real” baby now. She is sitting up more and more on her own, she is grasping things with her hand, she is making many noises, and is even attempting to roll over (far more difficult with only one hand). This is largely due to the daily attentive care from the occupational therapist, Christine. Pamela is very grateful for all that she is learning from Christine about child development and growth. Learning about being a parent is a very real blessing for Pamela and Pamela loves learning.

Most importantly, Angel is thriving here inspite of the traumas that come with this process. She weighs 14 lbs and looks ‘chubby’ (she has finally stopped biting her mother when she nurses). The areas where skin has been removed for grafting purposes (thighs and neck) has healed but will tomorrow be removed again. There are constant tubes and monitors and tub days where skin is examined and wounds are probed. The days are often long and tedious. Pamela is living in unfamiliar territory, yet her commitment to provide Angel with a full life is unwavering. The bond between this mother and this child is deeply interwoven into their souls and God blesses them every day with the joys of love and hope.

May each of us know those same joys in the living of our days, and may we continue to pray for this child and her mother.

Surgery update

Angel had a 5 hour surgical procedure last Friday (Sept 6th). The doctors needed to redo the eyelids because the previous graft was not taking. So they took more skin from her thighs and grafted the new skin onto her eye muscles once again. They then bandaged the eyes until yesterday when the bandages were removed. The results look good. It seems the eyelids are opening and closing now as hoped for. Pray that the grafting will take and there will be no further need for more surgery. And give God thanks for the amazing medical procedures that are helping this little girl.

During this same surgery the surgeons grafted some skin from Angel’s neck to her upper lip. They have begun to rebuild her mouth. It is a much needed surgery but it will be a long process.

Through it all, Angel talks and smiles and loves swinging in her swing and going for walks in her stroller through the hospital. There was even a walk in the stroller outside the hospital on the day before the surgery. That was a delightful excursion for both Pamela and Angel.

Last Friday was also Pamela’s birthday. Thank you to all of you who sent cards and visited her over the weekend. What a joy you all are to this young woman (23 years old now). Your involvement keeps her spirits up and helps her in this transition from a culture that is very social and very relational to this strange and foreign land. I cannot tell you how important you are to her.

Thank you also to the University of Texas med students for their gift of friendship. They came on Friday with a cake and birthday wishes. They were joined by other new Kenyan friends who have discovered Pamela and Angel but who live in Galveston. Who would have guessed that such a thing could happen? Is our God not big and far reaching and a unifying force in all of our lives?

Be One in the Spirit.

~ Sue

Infection cleared up!!

I just had a nice long conversation with Pamela. There is mostly good news with some confusing news.

To get the confusing and more minor news out of the way, Pamela has been given (without any consultation) two new roommates. Neither of them speak English and neither seem to want to try to communicate. They want lights off at 9pm which means Pamela can’t read or talk on the phone or work on her laptop and she is pretty upset. She is also worried about the safety of her “stuff”. Though I suspect that it is safe, I understand her concern because in Kenya it would be up for grabs.

I “advised” her to talk to her care coordinator. That’s why she is there and it is good for Pamela to address these things directly. Her coordinator can explain and at least will be aware of Pamela’s feelings about all this. So it would be good if something could be changed, even if it is only to move into understanding and out of misunderstanding.

On to the really good news….the bacterial infection is gone!! They got 3 negative cultures back and Angel is pronounced clean. In fact, they allowed Pamela to put her in her stroller and walk her outside, across the street to UTMB offices to see the nutritionist. Pamela said it was wonderful to be outside walking her baby down the sidewalk just like any other mom.

And the nutritionist had some good ideas about feeding. While she was in the office, they got Angel to stop biting Pamela by taking her off the breast when she bit and giving her the pacifier. Once she spit out the pacifier, Angel was put back to the breast, and it wasn’t long before she nursed more and bit less. Smart girl, our Angel!

She also tried her on the sippy cup and she drank from that as well. They are also giving her solids and she is taking those. Definite progress. They still have her on the feeding tube but it looks like we are moving off it very soon.

Tomorrow (Friday) the surgery on the eyelids (both of them) will happen at 10:00 am. It was supposed to happen today, but the operating room schedule was too full. The surgeon explained to Pamela that Angel’s eyes are the primary concern and the other surgeries will come but it will take many months. They still can’t give us any time frame.

So we trust the expertise that is surrounding this child and mother, and we trust God who has lead us to this point and who will unquestioningly lead us on day by day. We worship a healing God who is active and at work unceasingly. There is nothing to fear and much to hope for.

Stay close and send prayers. You are with us on this journey.

~ Sue

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New bottle!

I am writing from Denver. I arrived today to visit daughter and her family. But I also called Pamela to hear about Angel. This is the first day in two weeks that I haven’t been with them.

There was good news! Pamela said the nurses went shopping to find a differently shaped bottle. The ones they had just weren’t conducive to Angel’s sucking. Instead of sucking, she has been biting the nipple and playing with it. A few drops do leak down her throat but she is not getting enough nutrients. Without the ability to be bottle fed, Angel is necessarily attached to a feeding tube. The success of her grafting is largely influenced by the amount of nutrients she takes in.

But a bottle was found and she was able to drink 3 ounces in one sitting. Major accomplishment. We hope that she can soon move into Pamela’s room and out of ICU as soon as a routine eating pattern is established.

Whether Pamela and Angel are required to stay in the room in isolation will depend on the demise of the bacterial infection. She must have three negative cultures before she is pronounced rid of the bacteria. The last two cultures were negative and if she gets a third negative, we will have side stepped isolation. That would be most wonderful because then Pamela can take Angel out and about around the hospital.

There is another thing to be grateful for. The University of Texas med students who met Pamela and Angel in Maua when they were there to study mission medicine have continued their friendship with them. They have had a fund raiser and used the monies to buy Angel a stroller and other useful baby things and clothes for Pamela. They have brought pizza and friends to the hospital just for fun. They continue to call and visit and encourage Pamela and they generously share their love with Angel. I have included a few photos of them.

Always Pamela and I are full of praise for all of you who offer your ongoing endless love and prayers and support. Your presence in these lives makes a difference. May God bless you.

~ Sue

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Plastic surgeon consultation

I have been away for 4 days now and I miss Pamela and Angel very much. We have been a part of each other’s lives on a daily basis for months now so it is not surprising that it feels strange to be far away from them.

My daily phone calls tell me that Angel is only drinking 2 ounces from a bottle at a sitting. That is not enough. So she is still attached to the feeding tube until she can do better. There are some digestive problems too, so your prayers are still coveted.

There is a consultation happening tomorrow with the plastic surgeon and a plan will evolve to decide the next step. I know that Angel’s eyelids are not working properly and that is a major concern.

Pamela is still alone in her room and would love to have Angel join her there. Of course, she would prefer that the bacterial infection be gone and that they will not be required to stay isolated. More prayers needed.

I will keep you informed as best I can.

Thank you for being a part of these lives. May God breathe a spirit of joy into your day.

~ Sue

An Avalanche of Grace

The wonderful thing about the Pamela/Angel story is that many people are calling and offering their prayers and help. I feel like I am in an avalanche of Grace. It really is amazing how strong God’s love is and how it has captured so many of us.

Pamela and Angel are both very grateful to be here (I am assuming that Angel agrees with that). Both are also very absorbed by the process as am I. It is intense and painful for Angel as she endures procedures, and for mom and I as we watch. It is so hard to see a little one have to hurt. And the truth is she has hurt all of her life (at least from 4 days on), and I don’t see an end in sight. Shriner’s has told Pamela that she will need to bring Angel back every year for 20 years.

That in itself is amazing when I remember that this is all free medical care. And the care is so thorough and skilled. Pamela said the other day that “everything here is so excellent!” Then she added, “I like excellent!”

Me too.

With this excellence, Angel is growing. She has a nutritionist helping fortify her diet. She has a child development specialist following and guiding her into age appropriate behavior. She has a physical therapist and an occupational therapist stretching her abilities, and mom has a psychologist who she talks with every week. There are also weekly appointments with doctors galore. The result is that Angel is much more interactive, smiley, fat, and engaged in the world around her. It has only been two weeks but it is fun to watch her blossom. I just wish she wasn’t so badly burned.

There are, however, children here who have been burned much worse than Angel. They too, are developing to the fullest of their ability. I was talking to a 22 year old Hispanic man who came here when he was 4, and this is his last year. He made the comment that the fire was a part of who he is, but it does not and will not, define him. His goal, he says, is to be a professional pilot. He wants to fly above the world. He says that as he sits before me with one stump and a badly deformed second hand. I believe he just might accomplish that dream because this is the man who has painted the lobby walls in beautiful ocean scenes with that deformed hand.

God’s miracles continue everywhere. Each of you are one of them. Keep shining.

Much love,

Sue