We are finally home!!

Just a quick update for all my prayer warriors and followers. We are HOME!!! We were discharged yesterday after 10 days of being in the hospital. I can see God's hands all over our trip. This will be short as my life is calling but I wanted to share my insites. Having Shaun in the hospital allowed the Gastrointestinal Doctors to really figure out what may be going on with him and not being able to tolerate feeds. He was having a terrible time vomiting and not pooping easily. We tried changing formulas but this didn't help. I was at a loss of what to do for him. I was having a terrible time trying to see or hear from the doctors and Shaun was again loosing weight. He was in poor shape. Getting down to UVA, Shaun was able to get the different tube, the GJ tube to feed into his intestine. Although this doesn't allow him to be off feeds during the day, it does allow for time through the night, like a regular person, to be asleep and not using this power. We decided while in there that his getting a fever is like everyone in NYC turning on a light and not telling the power company they are doing so. This puts a huge strain on the system and overloads it. With that being said, we know now that any infection, sign of fever or sickness can be costly or dangerous to Shaun. We will have to take many precautions now. As they were getting ready for discharge, Scottie came down with the flu and double ear infections. Stephen is now showing signs of flu too so we are trying to be extra careful. Please pray God's hand of protection over Shaun, that he would be safe of the flu, and that it would be expelled from our house without incident. We are sure glad to be home and Shaun is loving seeing his brothers again, even though it is only from a distance. While in the hospital, we met many people and made some heart connections with the nursing staff, respiratory therapists, occupational and physical therapists, nurses and doctors. It is truly amazing to see God's hand in the midst of trial. I thank Him for giving me the insight to look for and things to find thanksgiving in.  Other ways God showed he was in control all the time was the clearing of the intussusception, being found out by one of the doctors who worked on Sarah after close to 10 years, showing interest in communication and learning during "School time" with Ms. Chelsea, and all the prayers and people being the "hands and feet" of Jesus while in the hospital. The doctors came up with a possible lead into Shaun's condition while we were in-patient. The test is out in Oregon right now and if confirmed I will let you know. It takes around 6-12 weeks for the test to come back but until then we will continue to love our little boy!

UVA: an end in sight?

As you may have guessed, Shaun and Denise are still at UVA.
They kept Shaun in the hospital because the doctors needed to change his feed duration (slowly) while monitoring his glucose and see how he tolerates everything.  The new anticipated discharge date is Wednesday.

Shaun did well with his 6 hour feed last night so today they will bump him up to 8 hours.  He has only thrown up once (as opposed to 10 times) which is also an improvement.

At home, Peter is scheduled to leave on a business trip on Wednesday morning and Scottie has the flu and bilateral ear infections.  This is not the environment that the doctors want to send Shaun home to - but Denise really feels like she needs to get home if Shaun doesn't need to be in the hospital any longer.  

Please pray for Scottie to get well soon, for Shaun to be protected from the flu virus that would be very detrimental to his health, and for Denise to find a balance in caring for her boys and that her rest would be multiplied that she would have the strength to carry on.

UVA continued...

On Friday, Shaun's procedure was successful - the j arm (extension of his G tube that goes from the stomach into the intestines) was successfully placed without the use of anesthesia, Praise the Lord!

Unfortunately they also found that Shaun has acquired a (hospital born) bacterial infection which has extended his stay in the hospital through the weekend.   They are hopeful for release from the hospital on Sunday, or Monday at the latest, provided that Shaun does well with his feeds tonight.

Shaun's grandaddy came to stay with him in the hospital Friday night to allow Denise to run home - see the rest of her family - and return clean and with renewed energy to continue to give to Shaun. What a blessing.

Now, the main hurdles are to overcome this bacterial infection in Shaun's gut, and to be able to gain weight - as he is around 8.5kg right now (18.7lbs).    Hopefully the next update will come from Denise, at HOME!  Let's pray for this!

UVA Update

When Shaun (and Denise) arrived to UVA and he was examined by doctors with another ultrasound, they could no longer find the intussusception, PRAISE THE LORD!  They have kept him at the hospital, however, to monitor his feeds (and blood work) and watch to see if it reoccurs.   This morning Shaun threw up again, which is a step backwards.  The current plan that the doctors have come up with is to continuously feed him small amounts to see if it will help the nutrition stay down.   Additionally, on Friday they will change Shaun's G tube (the feeds currently go into his stomach) to a G-J tube which will send the feeds in smaller amounts into his small intestines.  This should also help with the vomiting.

Please continue to lift the Steyaerts up in your prayers.  Of course for Shaun and the continued well-being of his GI track... but also for Denise, Peter, Stephen and Scottie as it is SO hard to be away from each other for so long.  I know Denise and Peter are incredibly blessed by all that have offered up their prayers and support (esp. with child care!) at this time.

Transferred to UVA

After spending the night at Inova Loudon Hospital, they repeated blood work and found that Shaun's white blood cell count was still high, at 29,000.  Not convinced that it didn't have something to do with Shaun's bowels (despite findings yesterday) they decided to do an ultrasound.  They found that Shaun has intussusception of his bowel.  When considering their options (transfer to Fairfax hospital or UVA) the GI doctor from UVA called and said they wanted Shaun there - so they have been in route to Charlottesville and just now arrived there.

The treatment plan is to give Shaun a barium enema to unfold the bowel and cure the blockage.  If this procedure is not successful, Shaun will require surgery to fix the obstruction.  After the obstruction if fixed, Shaun will be kept in the hospital until he has normal bowel function.

Please continue to pray for Shaun, Denise, the doctors and the rest of the Steyaert family.  Praise God they were able to determine what was wrong.  Now we are praying that the barium enema will be successful and surgery will be unnecessary.  Please join us in this!  We will continue to update here as we know more.

Shaun to Inova Loudoun ED

Denise and Shaun are currently on their way to the Emergency Department.   Shaun begun a cyclic vomiting episode this morning, wrenching in pain a lot.  It has continued throughout the day and the little guy has not been able to hold anything down.  He is now significantly dehydrated and running a fever (probably related to dehydration).

Please pray for Shaun -- to get the fluids he needs to hydrate his body, to stop vomiting and hold down his food so that he can get the nutrition his body needs, and to get rest for his little body.  Pray for the doctors to know how to best treat Shaun and help him at this time.  Pray for Denise to continue to have strength to do whatever is necessary, to have wisdom in making good decisions for her son and family, and to rest as well.  Pray for Peter, Stephen, and Scott, at home who are concerned about Shaun.  

Thank-you for lifting them up.


*****UPDATE*****
After running tests, his white blood cell count came back at 39,000 (the normal range of total WBCs is 4,500 to 11,000 WBCs per microliter).  All other tests came back normal. The doctors are going to do a CT scan and lumbar puncture to try and figure out why his WBCs are so high. 

GI issues

Shaun is continuing to struggle with GI issues and holding his feeds down. He throws up nearly every day sometimes multiple times a day, usually surrounding feeding time. We have tried to adjust his rates, change formulas, and do multiple things but it is not working. We will go to Charlottesville tomorrow to meet with our GI team and see what is next. Shaun just needs to gain weight so he can grow! He is around 19 lbs. 3 oz. right now, down from 19 lbs. 6 oz. before Christmas and 20 lbs. 8 oz at his 18 month well check in November. Please pray for the doctors, for us, his parents, for wisdom and for him to be able to tolerate and keep his food down and grow! We are thinking about seeing a new GI doctor/ dietitian but I am not convinced that it will help. We have a new pediatrician that works with another hospital but I like our team at UVA and feel like it would not help to get new doctors involved; ones that don't know anything about Shaun or his case, since we are in such a dyer spot right now with his weight gain and nutrition. We also need to get a new swallow study done to see if he is protecting his airway from his increased secretions due to getting new teeth. He has a hard time with all the GI tract. Pray for wisdom again and for answers in this New Year.


"...for You created my inmost being, You knit me together in my mother's womb; I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well." Psalm139:13-14.