Updates from our four office visits last week

Hello friends and family.

It has been almost a year since our last blog update. Overall, it has been one of the best years for Jacob, physically and healthwise, in the four and a half short years he has been with us. He hasn't required any surgeries and really only had one noteworthy procedure (an annual MRI). He was generally free from significant illness and grew a ton (gained 15 pounds and grew about 9 inches). Praise the Lord! This past week, we made a trip to Johns Hopkins Hospital in Baltimore, MD to visit with each of the four surgeons and also attend the annual picnic for extrophy patients. Below is a summary of what each doctor had to say and some info on what might be needed in the coming months and years.

1. Neurosurgeon (handles the spinal aspects) – advised that there is (and probably always will be) some tethering of the spinal cord. He said that at some point in the future, Jacob will likely need to have a surgery to release the tethered cord again, similar to what he had done in 2007. He advised that he will be looking for symptoms rather than relying MRI’s and indicated that unless things change, we can actually wait two years before getting another MRI (instead of getting one every year).

2. Orthopedic (all things bone related) – was pleased with Jacob’s mobility overall. He did notice that one of the supporting screws in his pelvic bones (originally put in during the 2008 surgery and redone in 2010) had pulled away from the bone. He’d like to replace the screw with a longer one, but feels like we can wait until the next Urology surgery in order to “combine efforts” and save anesthesia.

3. General Surgery (handles the colostomy/stoma/bowels) – we were a little concerned going into this visit because our regular doctor had to cancel due to an emergency issue that came up. The doctor we saw this time was one who had previously wanted to perform surgery on Jacob that we were uncomfortable with him having at this age. This time, however, he did not take that approach and really deferred to our regular doctor and the Urologist to help make this decision. We are thankful for this answer to prayer. They are, however, still quite concerned with the amount bowel he has on the outside of his body. The Lord has sustained Jacob, though, for over a year now with this “prolapsed stoma/bowel”. We do hope to speak with the General Pediatric Surgeon to get his thoughts and it is certainly a possibility that Jacob will need to have this concern addressed sometime before he goes to Kindergarten in the fall of next year.

4. Urology (all things bladder related) - because Jacob’s condition, cloacal exstrophy, is largely a Urological defect, we kind of refer to this doctor as the main/primary doctor of the four. He examined Jacob and was extremely pleased with how good he looked and how much he had grown in the past year. He was also concerned about the prolapsed stoma, even though that is not his area of expertise. We discussed when the next Urology surgery might take place (it would likely be a continence stoma surgery to allow Jacob to be “dry”). He said that it will typically between ages 5-8. After discussing it further, Courtney and I feel like we may want to wait until later so that Jacob will be able to “cath” himself and have more independence rather than relying on us to do if for him. In the meantime, though, the Urologist would like to check Jacob’s bladder capacity this fall to get a better idea of where he stands. This is an outpatient procedure and so far we have not scheduled a date for this to happen.

Overall, the doctors were very pleased with how much Jacob has grown, both in height and weight, during the past year. However, as noted above, there are a few areas of concern. We continue to covet your prayers for wisdom and direction on how to best proceed with the upcoming procedures and possible surgeries. As it stands now, we may see about combining the bladder procedure with the colostomy repair/revision so as to do as much as possible during our next visit.

God was so very gracious in allowing us to get into the Children’s House for our entire visit last week and for allowing our meetings with each doctor to go smoothly. We never cease to be amazed by HIS grace, mercy and love, demonstrated time-in-time again throughout this journey in our life.

Mommy and Daddy

Not just yet - prayer request

As we were preparing to leave this morning, we noticed that Jacob's stoma has again prolapsed out. The doctors a advised that we should meet them at the ER. We are here now, waiting to see what Dr Lau suggests. Outside of this, Jacob is doing quite well. He ate a little this morning and has been playing quite a bit.

This setback is definitely frustrating, but we are confident that God will work in and through even this that which brings glory to His Name.

Mommy and Daddy

Marching On

Jacob was released from the hospital this afternoon (Thursday). Praise the Lord. His stoma looks really good and he seems to be on the mend. When he first left, he attempted to take a few steps, but then wanted to ride in the stroller. When we got back to the Children's House, he took a "short" four hour nap. Wow. But this nap really made a difference for him, though. Plus, it allowed Daddy some time to do a little bit of work (part of his job can be done remotely). When he woke up this evening, he was doing a lot more walking and even managed to walk up two floors worth of steps, with just a little help. If all continues to go well, we will be making our way back toward Chattanooga tomorrow morning (Friday). Here are a few prayer requests and praises:

1. Please pray for safety as we travel, especially for Jacob. We do have some good meds in case he gets a little nauseated, but pray that he will handle the long trip well.
2. Praise the Lord that we only had to spend three nights in the hospital this time and hope to be heading toward home tomorrow.
3. Please continue to pray for James. He started some medicine today for the cough that he has been dealing with for the past two weeks.
4. Praise the Lord that Jacob has started eating a little and drinking quite well.
5. Along those same lines, though, please pray that his bowel function will soon return to "normal." He has not had a lot of output so far relative to what has been going in. This may take a little more time, but we pray that his full appetite will return and that he will not experience anymore of the bowel/stoma related discomfort that he had after his 2008 surgeries.
6. Praise the Lord that Jacob may not need any more surgeries for a couple of years.

Above all, though, Praise the Lord, for He is Good. Praise the Lord, for He is full of mercy. Praise the Lord for HE ALONE is worthy.

Mommy and Daddy

Today's Update

Jacob had a pretty good night, although our next door neighbors did make it a little challenging to sleep. Dr. Lau came by and is pleased with his progress. He feels like Jacob may be able to be released tomorrow. Jacob has started to eat a little, but still had not wanted to drink much, yet. He continues to receive pain meds through the IV, but may soon switch to oral meds. Jacob was able to get up out of his bed for a little while today and go into the play room. He walked a short distance by himself, but is still regaining his strength. We are not sure how long we may need to stay here after he is released, but there seems to be a good chance that we'll be able to leave by the weekend.

Please pray that this surgery will "work" in the long run. Dr. Lau seemed to imply that there is still a chance that his stoma might prolapse again, although he feels like it won't get to the extent is was prior to the surgery. Also, please pray for complete healing in and around the site of his incision. We were advised that there are a total of four stitches and we certainly don't want the area to become infected or open up.

We, do, of course, have some praises as well. Jacob has been once again "spoiled" by three of his favorite nurses and certainly a number of others that have cared for him over the years. We are so thankful to have individuals who are so committed to his post-op care.

We are also thankful that both James' and Gran's coughs are doing a little better.

We are able to love and serve one another because He first loved us.

Mommy and Daddy

Post surgery update - Praise

Jacob went back for surgery, with Daddy, at around 7:40 this morning. The surgery began just before 8:30 and Dr. Lau came out at around 9:00 to advise that he was finished. We were pleasantly surprised that he was able to finish so quickly, but definitely thankful. He advised that he was able to simply move Jacob's bowel/colon and attach it to his abdominal wall rather than having to place mesh or anything like that in there. He feels like this will prevent his stoma from prolapsing or at least keep it to where if it does, it will only come out a little. Jacob stayed in recovery for about an hour and now has been brought back to his room. The plans for now are to keep him in the hospital for a couple of days. The Lord graciously helped keep Jacob fairly calm throughout the entire process. He will be receiving paid meds, probably continuously, for the next 24 hours or so. Unless there are complications, Dr. Lau feels like we should be able to go home shortly after he is released from the hospital.

Thank you for your continued prayers and remember - Pray to the Lord and Praise His Holy Name.

Mommy and Daddy

The Admission and Prep

Jacob was admitted to the hospital a little after 2 pm today. The nurses have started an IV and put in the NG tube. The IV went in fairly easily, but the NG was a little more challenging. They have begun giving him the stuff with the strangely appropriate name -Go Lightly.

Thank you for your prayers and praises this evening as we prepare for the surgery in the morning. Pray for Dr Lau that he will have a steady hand and a solid plan for the revision. Praise Him for opening the doors for Jacob to receive his care at Johns Hopkins and providing for all of our needs (abundantly).

Almighty God is He.

M&D

A Safe Trip Up

Mommy, Daddy and Jacob arrived safely in Baltimore this evening. Thank you for your prayers. We are most thankful that we ended up missing the strong storms that came through the area. We saw quite a few trees down near Charles Town, WV. We do have one huge praise to share - on our way up this morning, we received a call from the Children's House, advising that they had a last minute opening for us. This is a blessing for all of us. Jacob loves being here because there are tons of toys to play with and new friends to meet. He has been asking us over the past few months - when are we going to go back to The Children's House? We certainly wish that we were just here for that, but at least he looks forward to this part of out journey.

Sometime in the morning, we will be calling the hospital to find out when Jacob is to be admitted. Please pray that this process will go smoothly. Also, please pray especially for Jacob as he will have a full bowel prep and possible NG tube put in. The surgery time is scheduled for 7:30 am on Tuesday.

We also like to ask your prayers for James and Gran as both have been battling coughs lately. Please pray that they will recover soon and the Lord will keep everyone else healthy, especially Jacob. James is staying with Papa and Gran this week in Knoxville and while we know he will have a great time with them (having a small pool there doesn't hurt either)t we will certainly miss him.

We heard a good sermon on the radio while driving up today. The theme of the message was this - no matter what the circumstances, there are two things we should always do - pray and praise.

Praise the One who, by His blood, allows us to come boldly before His throne of Grace.

Mommy and Daddy