Sunday, March 28, 2010

Back to the PICU again

Sorry for taking this long to update.  Because Mallorie continued to have seizures in the local hospital, despite having increases made in her seizure medications, the neurologist from Houston felt she should be transferred back to Texas Childrens, where she had been Feb 11-March 6. This time we spent most of the week in a 4 bed ward in the PCU (a floor that has monitoring of her vital signs just as the PICU has, but is for children who are somewhat stable). Gradually, they seemed to get the seizures in control, and we got her scheduled for a surgery to tighten the top of her stomach to prevent vomiting and reflux, because her newest seizures sometimes cause some reflux and vomiting, and we don't want her breathing in the stomach contents. She might possibly already have a pneumonia from this. She also tends to have difficulty breathing and her oxygen level will go down when the seizures cause refluxing. This surgery has been discussed in the past, but she did not seem to have respiratory problems coming from reflux in the past. But since February, Mallorie is different, and this is clearly needed. The surgery has been scheduled for April 6.

A couple of days ago, they transferred Mallorie to the neurology unit, because she was doing so much better in terms of not having had reflux or vomiting for awhile, and her seizures were much less frequent. Just a couple of hours before the transfer, she had a procedure done that triggered a LOT of gagging and vomiting, and the doctor doing the procedure saw her aspirating (breathing it into her lungs) while he was looking with a scope. Since having that procedure (which I think we will never allow to be done again), Mallorie began refluxing severely, and then she began having seizures again, and even giving her a few extra doses of seizure medications didn't stop them. She also began having dramatic color changes and a lot more trouble breathing, so she was transferred to the PICU last evening a little before 7 pm. The same place where we spent most of the last hospitalization. She had a rough night, with a couple of seizures, more refluxing, and agitation. She was unable to sleep all night, and even though we attempted to tape her eyelids closed just to protect her eyes from drying from the oxygen she was receiving, she still kept her eyes open and was wide awake with hiccups all night. By morning, though, she fell asleep. One of the doctors today explained that any stress - such as an illness, or the increased reflux and struggles to breathe - could make her more likely to have seizures start up again, even though her seizure medications had been working for her before. So the hope is that helping her to get past whatever started this happening again will allow the seizures to stop. Right now, she doesn't seem to be having seizures, but she is having reflux and is running a fever, and they've tested her some viruses. Right now she is needing quite a bit of extra oxygen, but she is breathing on her own and resting.

An emergency medicine doctor who is working in the PICU for the next 24 hours came in to introduce herself because she was very interested in Mallorie. Her background is cardiology, and she said when she read, "Trisomy 13" (I guess in her record, since we never had genetic testing to confirm this), she wanted to know if Mallorie had a VSD, which is an abnormal hole in a particular area of her heart. I smiled, and said, "As a matter of fact," and went on to tell some of Mallorie's story. When I told her that all of the holes in her heart had closed, she said, "That's extremely unusual." That's something I seem to forget, sometimes, and it was good to be reminded. We talked about Mal's cardiologist's strong belief in good nutrition to allow for the holes to continue to close, she said, "Maybe it was all that breastmilk." I had to tell her that I know it sure helped, but also that a lot of prayer has gone into Mallorie's life.

There have been many times when I've wondered how anyone else can truly learn from Mallorie as we have. I know that John and I and our other children have gained so much from having Mallorie in our family. Our kids love her passionately, and have been changed by loving her. There is a compassion now developed in them that is beautiful to see. But I have verbalized in the past that it feels like the full benefit of Mallorie is sometimes "wasted" on others. I thought that particularly some of her medical specialists might never get the full benefit of knowing her. But today, I got a glimpse of something else. Mallorie seems to have some work to do in her life here on Earth, and a part of it may be to teach others to think a little outside the box.

While I beginning to write this, the same doctor just came in to ask some more questions. She said, Mallorie is 3, and children that age aren't usually eating a full liquid diet. She started thinking aloud about the idea that a common treatment for reflux is to thicken feedings, and since she had heard that Mallorie is normally fed baby foods through her g-tube, in addition to breast milk, she thought that giving her solids by tube would be preferable to anything liquid right now. I know my mouth must have been open, because telling these doctors that we feed her "real food" through her tube has always been one of the things that help me to see the crazy in the doctors' (and sometimes nurses') eyes. And I can't tell you how many times I have to explain the whole donor breastmilk idea. Yet this doctor kept talking out her rationale, and asking for my input. All I could think was, Really? This doctor is suggesting we you feed this tubefed baby pureed foods instead of a formula for tubefeeding? She also asked what I thought about giving breastmilk for a part of her nutrition, "for the immunoglobulins." :)

Conclusion:  This post has been several hours in the making, so I'll summarize the rest of the day. Mallorie continued to have more frequent seizures, and a beautiful team of physicians, nurses, and respiratory therapists spent a lot of time in her room, planning, discussing options, changing plans, debating. A series of interventions were used which ultimately stopped the unending seizures, with the end result that Mallorie is now zonked, and finally able to catch up on the rest that she missed last night, while Hannah and I split the night hours with her. (John had not been feeling well, so we kept him away just in case he might be sick.) There is a back-up plan in mind if this is only a temporary calm, but I think it's been going on now for at least a couple of hours. The back-up plan may or may not result in a tube being placed in Mal's airway and her being put on a ventilator, and even if that happens, there are benefits that could come along with that possibility. Her fever is down, and she is breathing peacefully, although she does require oxygen through a mask. Or at least, no one is willing to test her without it yet. :)

Today's physician team plans to ask the team tomorrow to ask the surgery group if they would consider doing her surgery sooner than April 6. The longer that she has to wait to have the surgery, the more they feel she is at risk of having aspirations. Already they've canned the idea of feeding her, and she is receiving TPN (nutrition through her IV). Someone said the surgery group had hoped Mallorie would have longer on the antibiotic she is receiving, before taking her to surgery. So there are pros and cons of moving up the date and of keeping the surgery at the scheduled time, and truthfully, I believe only God knows which is best, so I'm praying He will work out for Mallorie only what is best for her. Since that's what He has always given her (sometimes visible to us only in retrospect), John and I are trusting this time will be no different.

Please pray for God's continued protection of Mallorie and for wisdom for those caring for her. And also please pray for our other children during this time when the family cannot be together. And please pray that I am able to sleep well in the coming nights, because I cope a lot better, and tend to be a lot nicer when I get enough sleep.


ANewKindOfPerfect said...

Wow, what an update. First I wanted to say that it is great that this doctor came to you with an open mind! We do a blenderized diet through Peanut's g-tube. It makes a huge difference in the amount she refluxes. She has had the Nissen fundoplication twice, and although the second one is still intact, she can reflux through it.

I hope that the fundo gives Mallorie some relief. I hope that it helps the seizures slow, or at least prevents aspiration while seizing. This is such a hard thing to deal with.

I hope you are able to get some sleep tonite. As you said, we are always able to cope better with some sleep!


Praying for sweet Mallorie and the rest of your family. You have all been through so much. I hope you are able to get some much needed rest and that things continue to look up.

Kathy said...

Praying for sleep for you and Mallorie, for Godly wisdom for the entire medical team, and for God's timing on the surgery. Praying for your family during this time of separation and for Mallorie to be able to get home some so she can be surrounded by her loving family. Praying for strength and the peace of God that passes all understanding for you Connie!

Laurie in Ca. said...

Praying for you and your family as you continue to trust God with sweet Mallorie. I know He will bring the right people and procedures at the right time as He always does. Hoping He floods you and John with sweet rest and peace Connie. I will continue thinking of you all and praying often. I love you.

Love and Hugs, Laurie

The VW's said...

Sorry you guys are back in the PICU, but it sounds like you are making lots of progress there! I'm happy that you have a doctor who is interested and who is really thinking about Mallorie's care...this is always a blessing!

I will respond to your email's been a busy weekend around here. I'm thinking of you and praying! Hang in there! God has all this figured out for you! Love, Hugs and Prayers!!!

poolja said...


I was just thinking about you and wondering how things were going. I am sorry to hear you all are back in the hospital again. I will pray God will give you wisdom and peace throughout this trial. How difficult this must be!

I hope and pray you are able to determine what is causing Mallorie's seizures and that the surgery will help to keep her from aspirating. Will she be having a Nissen done?

Thinking of you all and praying,

Kathleen said...

Hugs and prayers from a loyal lurker.

Annie said...

I know this is a long shot but I will "put it out there" just the same. A friend of mine has a very healthy 8 yr old with full tri 13. When she was 3 she had seizures. Teh doctors kept increasing the phenobarbital until the father was sure she was having toxic shock and was going to die. He charted out the seizures with every possible correlating factor as remote as time of BM. He concluded that the seizures were not "just the way it is with tri 13" as the doc had insisted. He asked to have an endocrine spcialist. This was a challenge because we live in Canada which is not exactly trisomy friendly. It took a visit to the police and the head lawyer at the hospital and finally, the specialist was called in.

Indeed, dad was right. The child had a simple vitamin B6 deficiency. Due to digestional issues, she had not been eating a diet that was suitable for her age requirements.

She has been seizure free ever since.

I hope that Mallorie's seizures are resolved quickly.

Annie's mom

Krystal said...

I am sorry that Mallorie is having so much trouble. I am praying for all of you, especially for God to lavish you with wisdom, peace, strength, and encouragement.

Just Another Ordinary Miracle said...

I am saying an extra prayer for you today. Your story is amazing.

I found your blog today - funny our daughter was thought to have either defect to chromosome 18 and 13 too. Boy were they wrong. she has something a little more rare. But the past - almost four years- have been the best years of our life. In it for the long haul too! It's great to meet you!