Thursday, August 26, 2010

FEES study

Today we had our last and final test.  The FEES which is a fiberoptic endoscopic swallowing study.  Henry was a little champ.  They  put a little camara down the nose and into the back of the throat and have him swallow different liquids that have a food coloring in them.  This allows them to watch his swallowing function and coordination and to see if he is aspirating at all.   They tried the thick feed I've been making and even tried thinner.  Basically, he did great.  He had a tiny bit of residual that was in his throat but with several more swallows it cleared and even with the thinner liquids he never aspirated.  This is really great news.  It helped to clarify some of what we saw in the first swallow study.   I thought he had some issues with swallowing when we did the first swallow study.  However, this study today showed that while sometimes there is a little bit of liquid that pools, he seems to control his swallow and protect his airway; which is the most important part.  The ENT doctor told us that he takes really big sips of liquid and that we simply need to try to slow him down.  This can be done by using a cup where I control how big of a sip he takes.  Also, we can use a spoon at first for the thinner liquids to help him sip slower.   Also, with thickening foods we should just start slowly and work up to more textured foods.  It was so reassuring to hear that he does not really have ANY swallowing disfunction, just "inexperience" as the ENT doctor put it.  We couldn't have had a better outcome.  Really, this to me is also a huge blessing from the Lord.  With all that Henry has been through, the speech therapist said he could have lots of other problems.  It is really great that he doesn't have any adversions to eating and that he is so coordinated and has not lost the ability to eat normally, which can happen when you have had the challenges that Henry has.  We are so happy! 
So, with that, we are going home in the morning, so I better take off!  I plan to continue to write about our progress for those who are interested and also will try to post some pictures when we get home.

Thank you for joining us on this journey and for all your prayers.  I know God has used Henry to encourage many of you in your prayer lives.  It would mean a lot to me if you want to comment and put your praises to Him here on this page.

Wednesday, August 25, 2010

Another mirical

We had the scopes this morning.  Again, I could not be more impressed with Cincinnati Children's Hospital, every thing they do is completely top notch.  The nurses were very sweet and we also got to meet the famous doctor Cotton.  Our time with him was too brief to snap a picture, darn!  Fourty or so minutes after we left Henry in their care, we were ushered into a room with EVERY doctor on his team.  Yes EVERYONE was actually in one room at one time, communicating with me about my son!  AMAZING! 
Doctor Cotton spoke first, "the good news is, Henry does NOT have a cleft."  I am still processing this but as I listened to all of the doctors speak, I heard over and over again.  His airway is not swollen, his lungs are completely clear, his stomach and GI tract are normal and not irritated, he DOES NOT HAVE A CLEFT.
The doctors told me that tomorrows FEES study will help us to understand better why Henry is still having some problems with swallowing.  It could be lack of experience and they all were very positive that with some therapy, he will learn to tolerate liquids and solids.  Doctor Putnam, the GI doctor, told me that the G- tube could be removed within a few weeks since we don't need it anymore. 
I am still processing all of this.  The pictures of Henry's airway were so significantly different than pictures taken a few months ago.  The pictures from Denver were red with lots of swelling, these pictures showed a normal healthy airway.  God has indeed done a lot of healing in little Henry's body.  Thank you all for your prayers for us.  They canceled his surgery for Friday and instead we will be driving home.

Please pray for the FEES study tomorrow.  It can be a bit uncomfortable so I'm praying Henry will cooperate so we can find out what we need to know so we can move ahead with teaching him how to eat.

Oh, also today, Doctor Johnson, with whom we are staying, scrubed in on Henry's case.  He wasn't scheduled to be in the OR today, but he went in, just to be with Henry.  It was really kind of him and reassuring to know that he was looking out for him!  After I pick his brain tonight, I will update on any thoughts he had about what he saw in the OR today.

Thank you all and I'll let you know what we find out tomorrow.  Things are looking up!

Tuesday, August 24, 2010

Swallow study

This morning's swallow study confirmed that Henry is still having issues with swallowing.  Infact, they never even attempted to give him anything thinner than what is called "nectar" thick, because the "honey" consistency was going to close to his vocal cords.  I was very pleased with the radiologist and the therapists who took so much time to gather information about all the issues we've had with feeding Henry.  They told me that after the scopes tomorrow morning and another swallow test, called the FEES, which will take place Thursday, we should have the "FULL PICTURE."  They are very thorough here and it is so reassuring.

We actually are meeting with Pulmonary and GI as I type.  We just saw Doctor Putnam and Doctor Wood the pulmonary doctor will be in any minute.  These guys are the best in their field and I am tempted to ask for a picture because they are pretty much famous surgeons!  We could not have a better team of specialists working on Henry.  Also, the doctor we are staying with, is an ENT fellow and has done many cleft repairs himself.  He graciously took a lot of time last night answering all kinds of technical questions about how they actually do the repair, it was facinating and so helpful to have his expertise at my disposal.  Truly, the Lord could not have made this situation more perfect than it is.  It is so unbelievable how smooth everything has gone so far and I feel such a peace about going further. 

We will have a LOT more answers tomorrow afternoon after the doctors actually scope Henry's airway and see for themselves what he looks like now and rediagnosis his cleft and airway issues.  I will let you know what we find out, we are very excited to have the best of the best assessing him tomorrow morning.

The procedure will begin around 11:00 AM so please keep little Henry in your prayers.  Love to you all. . .

Cuddle time

The other night I was typing in the living room.  Aston, who is the two and a half year old son of the doctor we are staying with got on the couch and  sat next to me.  He looked at me for a minute and watched me type.  Then he took my arm and put it around him, and he shut my computer!  I got the clue that he wanted to spend some time with me.  He is the same age as my Andrew, and it was like the Lord gave me a little comfort.  Aston's mom was at work and my son was away from me.  So we sat together and watched cars and comforted one another.

Sunday, August 22, 2010

Letting go of idols

The family we are staying with brought us to their church this morning.    Ever since I arrive here I have had a sense of nastalgia remembering my college days.  For those of you who don't know the history, my family moved to Ohio after my freshman year of high school.  We lived in the very small town of Jackson, OH.  I graduated from high school there.  I went on to study nursing at Cedarville College here in Cedarville, OH.  So, I spent a lot of time in Ohio, but I haven't been back since I graduated college ten years ago. 

The church we went to this morning was a very small congregation, as are most of the churches out here.  They aren't huge like our churches in Colorado, where you can kind of get lost in the crowd if you wanted too.  People of course recognized us as newcomers and were very kind and welcoming.  We told them that we were here for Henry's surgery and they said they would be praying for him.  I feel that the Lord has been using the kindness of strangers to show His love to me.  Prior to us coming here I had a night at work where a Christian family did something similar.  I can't say a lot because of confidentiality, but basically this family was there because their child was in the hospital at the time.  I was their childs nurse.  I of course was there to take care of their child, but they used their time at the hospital to speak God's word to me.  The father of my patient was like a walking Bible.  Every time he opened his mouth God's word came out.  It convicted me greatly, that I too need to hide His word in my heart.  They also asked me to come to the room for a time of prayer.  I thought we would be praying for their hospitalized child.  Rather, they prayed for Henry and for me.  I can't hardly put into words what this meant to me and how it ministered to my heart.  This was right in the middle of that battle with the insurance company.  The Lord used them to comfort me with His word.

I have to admit that during that whole battle with the insurance company my heart was not always in the right place.  I couldn't believe the anger and frustration I felt.  It was not a coincidence that the preacher this morning spoke about Jonah.  God's word is a double edged sword and this morning it cut me to the core.  When I thought that God had closed the door for us to come out here, I became so cast down in my heart.  I also became full of anger.  And I told the Lord how mad I was.  I didn't understand why He would take us so far down a path only to then shut the door on us being able to get Henry the help that he needs.  Not only that, but I think that over the past two years, I have sort of kept a list in my mind of all the unfair things that God has allowed into my life.  Matt loosing his job, me having to go back to work with four kids, having a sick child, and then what I thought was God closing the door on Cincinnati.  I felt like God was giving me sort of a raw deal.  I guess I had some expectations about how my life ought to be, and God hasn't really been fullfilling my expectations.  In my anger and tears, I thought about the verses in Peter "Consider it pure joy my brother when you face trials of many kinds, because the testing of your faith produces perserverance . . ."  I thought, where is that joy?   I know from Paul's discussion in Philippians he found joy even in prison, inspite of his circumstances, why couldn't I? 

The pastor today talked about Jonah and how he got so angry with God because things really weren't turning out the way he expected.  He talked about how it takes the "hard stuff" of life, the disappointments like the loss of a job, and illness, and unexpected diagnosis, an attack on your reputation, challenges in your marriage, etc.   to reveal the idols in our hearts.  It's only when we are under fire that we see what our hope was in, rather than God.  I guess that I've been putting a lot of hope in a cure for Henry, I've been so desperate for it, that perhaps it's become all encompassing,  it's taken all my energy, it's become an idol.  When we want something so badly, when we want something more than we want to know and love God, it becomes and idol.  I hadn't thought of it that way, until today.  I knew I was having a temper tantrum this week, but I hadn't seen the cause as me having an idol in my life.   It was liberating to recognize it, and to be able to repent and know that, like he did Jonah, God still loves me.   It helps to know that God used Jonah in such a big way, to save a nation, even after the big fit that he threw.  I'm glad we have a Bible full of stories about real people with real problems,.   And God uses to do great things in spite of their humanness.  AMEN!

Also, it happens that there are several doctors that go to the church we visited this morning.  One of the doctors was actualy the preacher this morning!  Another  doctor was a friend of the doctors that we are staying with.  He is doing his residency and after I talked to him he wrote down Henry's name.  He said that he is working this Friday night and would come by and see us after the surgery.  It's just so cool to me how the Lord has put these people in our path.  It's such a comfort to already know several doctors who work at the hospital, including the people we are staying with.  Even more, they are believers and are praying for Henry! 

It has been so clear to me that God ordained this trip.  He is putting me at peace each day and confirming that He has it all worked out. 

"From the depths of the grave I called for help, and you listened to my cry.  You hurled me into the deep, into the very heart of the seas, and the currents swirled about me; all your waves and breakers swept over me.  I said, 'I have been banished from your sight; yet I will look again toward your holy temple.'  The engulfing waters threatened me, the deep surrounded me; seaweed was wrapped around my head.  To the roots of the mountains I sank down; the earth beneath barred me in forever.  But you brought my life up from the pit, O LORD my God.  Salvation comes from the Lord."  Jonah 2:2b-6a

Those who cling to worthless idols forfeit the grace that could be theirs.  Jonah 2:8