A Lil' Boy's Journey to Live….

Archive for October, 2008


Happy Halloween!! 
Yesterday we went to meet the new doctor that had been suggested by Kim, Gene’s friend.  Well….he feels that Riley’s situation is to complicated for him to handle at this time.  He doesn’t feel he can give him the time he would need.  I was alittle taken back, but what can I say?  At least he was honest!?  So now we start again. 
Chris contacted a doctor she knew.  Dr. Hummel.  She knew him from Donny and Michael, but also from when she worked at Lincoln.  He was a client.  Anyway…it turns out that he is a CHOP pediatrician.  She told him about Riley, and he is willing to see him as a patient.  This would be good because he would have access to all of CHOP’s info, weither it be lab reports or test results, whatever, he can have access to it.  I like that idea.  Everyone in one network.  Soo…we’ll see.  I’m going to talk to Dr. Szwast on Wednesday, and see what she thinks.  I’m sure she’ll think it’s a good idea.
On another note…as you may have saw on Chris’s page, she got a pulse ox donated to Riley!  How awesome is that??!!  I’m not sure of the company right now, but when I am I will be sure to thank them.  Chris, though, is fantastic!  She got the pulse ox, her friend is getting Riley the crib, she got Dr. Hummel, she’s starting to move forward with the benefit.  By the time she’s done she’ll deserve the Extreme Makeover:)  Don’t get me wrong…alot of people are doing great things for us including Terry, Jackie, my parents, Dennis, Christian’s school and on and on.  Thank you to everyone!
Today we are going Trick or Treating with Jackie and family for Riley’s first Halloween.  He had his monkey costume on this morning for Christian’s parade at school, and he looked so cute.  I will get pictures later and post them.  Until then…




Riley had to wear his new winter suit from Pop-Pop and Granny today.  The weather is horrible.  He was as snug as a bug in a rug!



Thank you to everyone for their great advice on pediatricians.  We have decided to go with Dr. Mirmanesh.  He was recommended by Kim, who is a friend of Chris’s exhusband Gene.  We have made an appt. to meet with him on Thursday.  Hopefully he will be as great as he sounds, and we will have found Riley a new pediatrician.
In other news…Riley was evaluated yesterday by early intervention.  He is eligiable.  This will help with his feeding, as far as baby food, sitting up, rolling over, his verbal skills etc.  I’m pretty excited to get that started, but it will take alittle while before things really get rolling.  There are several meetings before the actual therapy will start.
We are still looking into the pulse ox.  It will be covered by insurance, but it’s out-of-network.  It will be cheaper in the long run to purchase one.  Chris is looking into having one donated.  That would be fantastic!  If not we will figure it out. One last note….I want to Thank Riverside School district.  They had another Jean Day last Friday.  Thank you to my sister, Terry, for putting that into motion!  Also…Thank You to Christian’s school, Somerdale Park, who had a Coin Drive for Riley over the past two wks.  The love and support we feel from the community is overwhelming!  Thank You:)


Riley had the milk scan today.  He was a true Champ!  He drank his bottle, and then was "taped" down to a table for a hour.  He layed there and watched Baby Einstein for about 45 minutes, then he started to fuss a little.  By then he was almost done.
The scan showed that he was refluxing up to the top of his esophagus.  He was not aspirating into his lungs, though, which is good, and his stomach was emptying accordingly.
Dr. Szwast called me this afternoon and told me the results.  She is thinking that we should do the Nissan, and at the same time do the Ladds Procedure.  She wants to talk about this with here colleagues.  We want input from Dr. Rome, and Dr. Rycheck, and the GI surgeon.  Dr. Szwast is stressing that the Nissan is a pretty big procedure.  She also is not sure if they will do the two procedures together.  I asked if we HAD to do the G-Tube.  I feel that if we could just get Riley to stop vomiting he would start gaining more weight.  He takes a bottle.  He has issues keeping it in.  Again….this needs to be discussed.  The G-Tube usually comes along with the Nissan.  I just don’t want him to have to have the G-Tube if he can do without.  We will discuss all of this further on Nov. 5th.  We go back then for the sedated echo.  At that point she will have had a chance to speak to the other doctors.  So the 5th should be an informative day between the echo and these new discussions.
My sister, Terry, is having Jean’s Day tomorrow in her school district, Riverside.  Thanks for that!  She emailed me some info she was posting tomorrow, and I thought I would share it.  It is pretty informative.  Explains alittle bit about the procedures I’ve mentioned.
The general aim of GER surgery is fundoplication, which means a band of upper stomach muscle is wrapped totally, or partially, around the lower esophagus, in effect tightening the valve and lessening reflux. In the Nissan procedure, a total 360-degree wrap is performed, whereas in the Thal procedure a partial wrap is performed. Because with the total wrap a child can lose the protective ability to vomit, burp, and retch, the partial wrap is often the preferred choice. In a 1987 study of 7,467 infants and children operated on for GER, there was a 94 percent cure rate. GER surgery is considered particularly beneficial for infants who are neurologically impaired.

The bowel will be detorsed (unwound) and checked carefully (see pictures). The bowel that turns pink (showing returned circulation) after torsion is good bowel. If all bowel turns pink, a Ladd’s procedure will be performed to put the bowel in place to prevent another volvulus. An appendectomy is usually done since the appendix will not be located in the normal area in the abdomen. This could lead to confusion and delay in diagnosing appendicitis in the future.

If there is a question about the bowel’s viability, the abdomen will be left open and a second-look procedure will be planned within 24 to 48 hours.

If there is a section of necrotic (dead) bowel a colostomy may be needed temporarily. The ostomy nurse will consult with you on ostomy care.

The operation done to repair malrotation is called Ladd’s procedure. In Ladd’s procedure, the abdomen is opened (Diagram A).

The small intestines are seen first and appear to hide the colon. The entire intestinal mass is delivered out of the abdomen (Diagram B).

The intestinal mass is rotated to reduce the volvulus (Diagram C).

The intestines are re-positioned in the abdomen (Diagram D).

Diagram E shows the appearance of the intestines at the end of surgery

What is a Milk Scan?
A Milk Scan is a test that can determine if your child has gastro-esophageal reflux. It can also measure the rate at which the stomach empties.

This exam requires the use of a radiopharmaceutical mixed with milk, breast milk, or formula that your child will drink.

What should you expect during the exam?
The technologist will ask why the Milk Scan is being done, and explain the study to you and your child. We will then place a small amount of radioactive material into the milk/breast milk/formula that you bring from home. There are no side effects and the medicine will not change the taste of the milk/breast milk/formula. Your child will then drink their milk/breast milk/formula. Your child will need to drink two to eight ounces, depending on their ability, in ten minutes. We will work with you if your child has special needs.

The scan will begin while your child is swallowing and will continue for approximately one hour. Your child will lay on their back, on our table, with the camera underneath them.

If your child has a history of problems with swallowing, a special tube called an NG tube (nasogastric) will be inserted prior to the study by a Radiology Nurse. The tube is inserted through the nose and ends in the stomach. The liquid will be injected through the tube for the exam.

We do not sedate for this procedure.


update 10/22

Riley saw Dr. Szwast today.  He has gained alittle more weight…coming in at 12 lbs. 11 oz.  Let’s not forget that he is 6 1/2 months old now. 
Now to what you really want to know….his pulse ox was 84%.  We will take that!  So we are following the original plan and now going back in 2 wks. for another sedated Echo.  This is also good because Dr. Rome is on vaca until Nov. 3.  We want him to be the doctor in the Cath lab putting the stents in, when it’s time.
We did discuss getting a pulse oximeter for home, and she thought it was a good idea.  She gave us a script for one.  The only problems is that with our insurance all home type medical equipment is through out of network.  This gives us a $1,000 deductable.  We’re thinking we are better off buying one.  That’s not cheap either, but could be in the long run.  We’ll see.
We also discussed Riley’s reflux issues.  Tomorrow he is going to have a milk scan done.  This is to check the severity of Riley’s refux and to check for aspiration.  Dr. Szwast was thinking it may be a good a idea to go ahead and do the G-Tube and Nissan procedure, along with the Ladds procedure.  Reason being that Dr. Spray can’t do anything, surgically, to Riley’s heart until the situation with his veins is under control.  Riley was originally suppose to have the Ladds after his Stage 2, but we don’t know, now, when or if that will happen.  With his vomiting issues, and weight issues….the G-Tube and Nissan are becoming more and more likely.  Thought being if we need to do any of it….do it all at the same time.
So…again…we will see.  A test tomorrow…An Echo in 2 wks.   
I’m still waiting to hear back from the insurance company about the synagis.  Dr. Szwast also thinks that maybe Riley should see a pediatrician at home, rather then a Family Care doctor.  She said this was the first time she ever even heard of an issue with the shot, because most of her patients go to pediatrician’s, and they would carry the shot.  There were a few other reasons she mentioned, but their not important. 
So…I found a CHOP pediatrician, but he is in Mt. Laurel, and thats a little distance for us.  I’d rather have our doctors closer to home.  I also don’t want to just pick a doctor out of the yellow pages.  If Riley is going to leave one doctor for another I want that doctor to know his stuff.  If anyone knows an AWESOME pediatrician let me know. 
Well…thats pretty much all for now.  U’ll know more when I know more….

update 10/20

Today Riley went to his Primary for a well visit.  Only good thing that came out of it was I had them check his pulse ox, and it came up at 80%.  If it reads 80% on Wednesday at CHOP we are in good shape.  We will still be able to put off the stents.
In other news….Riley needs to start getting a Synagis shot every month.  We thought he would get his first shot today, but apparently it is very costly so they don’t keep it on hand.  I would have to call the ins. company and have them send it to us, and we take it to them to be admin.  So I called both ins. company, Aenta and Horizon who does our RX, and they said it’s not covered.  This shot costs over $3,000 a month.  So now we have to have CHOP send an enrollment referral to Horizon’s speciality pharmacy, and they will review it and get back to us if they will cover it, and if so how much.  I pray they let us pay our usual copay of $25.00.  If they come out with some outragous figure I’m not sure what we will do.  All we can do for now is keep our fingers crossed that this works out in our favor.  Something has to!
Also…next Monday Riley will be evaulated by Early Intervention.  They will come out to the house.  After their evaluation they will tell us if he is eligable.  This would help with his sitting up, rolling over things of that nature that he is behind in.
Next thing is CHOP on Wednesday.  Lets pray that things are still ok.  We know his veins are obstructed, but we need his body to continue to handle it!


We went looking for Halloween customes today.  We thought we liked the Elephant…..until we saw the Monkey!

Riley will be a Monkey for his first Halloween!


Dr. Szwast called back today.  She spoke w/ Dr. Rome and Dr. Spray and they want to wait on putting the stents in.  Dr. Rome would rather wait for Riley to be a little bigger or for his numbers to be affected.  He says that children tend to react better to the stents when they are bigger in size.  We will go back in 2 wks to check on Rileys pulse ox.  If it is lower at that point she will send him down for an Echo and schedule the Cardiac Cath. to do the stents.  If he is ok in 2 wks. we will go back 2 wks later and have a sedated Echo, and check on the veins.  For now I have to watch his coloring to see if he starts to turn blue, and watch his breathing. 
Keep praying!  The journey continues!


Riley’s Echo today seem to go the way they thought it would.  Of his four Pulmonary veins, two are obstructed AGAIN!  These are the same two that Dr. Rome used the cutting balloons on last month.  The only difference this time is that the obstruction didn’t appear to be affecting his number.  His pulse ox was mid 70’s to mid 80’s.  Last time his pulse ox had dropped to high 60’s to low 70’s.  So what does this mean?  It means that the stents are next.  Dr. Szwast is going to spk to Dr. Rome tomorrow, and see when he thinks it should be done.  After the stents are placed they will then discuss Riley in conference and decide what should be next.  Stage 2 or listing for transplant.
On another note….he gained alittle weight.  He went up to 12lbs. 2oz.  She was glad to see some gain, but I told her that he still vomits, ALOT.  She gave us a referral to see a GI doctor.  She also suggested he receive some progressive therapy to help with some of his skills he is falling behind on like sitting up.
Soo….I will wait for the call tomorrow from Dr. Szwast to see what Dr. Rome says.  I will update when I know more.
PS…Thank you to Jackie for keeping me company today.  Although I know she was really there for Riley not me!  Love her all the same:)


Good Morning…well we will be leaving shortly to go to CHOP for Riley’s sedated Echo.  I am just asking everyone to pray that are results are different then they usually are at an Echo.  It would be GREAT to hear that the veins have not narrowed any further!  Fingers Crossed!  I will update later! 

Tag Cloud