Pictures of our Trip

Enjoying some on Nicaragua's finest watermelon...by the pool at Kim & Nathan's house.

Brad & Braden

Brad & Braden at Masaya Volcano in Managua, Nicaragua.

Yah!!

Braden just had another video-flouroscopic swallow study and an appointment with his doctor in the pulmonary clinic. The swallow study went well and we noticed a marked improvement in his condition since the beginning of summer. He was swallowing the nectar-thick (single-thick) liquids quite well and the technician even tried some regular liquids which he managed some good swallowing with. He isn't quite ready for the regular liquids but he is able to handle the nectar thick well enough to switch from honey-thick (or double-thick). We are very happy with this news because it means he is developing better swallowing reflexes. This is in part due to regular development and also in part because he is on the proper doses of Prevacid for reflux. The Prevacid keeps the stomach acids from being sloshing around in his throat which in turn then doesn't allow for swelling and damage to the throat. The doctors were confident enough with Braden today that they recommended his next set of appointments be in March of next year. This is great news and hopefully Braden is able to stay stable through the cold and flu season and with that be able to continue with his swallowing development. The hope would also be that we are able to take him of the thickeners by next spring (his second birthday). This is what we will hope and pray for over the winter months. We are also so thankful for your prayers and support.

A summer update...

Braden loves to give his "cheese" smile when we pull out the camera!!

It has been a while since I last updated Braden's blog so I thought it should be time once again.

Things have been going quite well the last 6 - 8 weeks. The first week or two after our appointment was a little up and down but since Braden has had his reflux medication increased he has been able to be without his tube completely. He is drinking the double thick liquids (thickened with a product called Thick-It) and he is fairly stable. He definately still sounds congested quite quickly but is able to clear it up on his own by coughing. The doctors said that if his body is able to cope with it on its own then he likely won't need a stomach tube put in. This is great news of course and we are still hopeful for continued (very slowly it seems) improvement in Braden's swallowing.

When he returns to Children's Hospital in September they will once again redo his swallow study and who knows, maybe we can decrease the thickness of his liquids. So far he seems to handle whatever comes his way and his appetite and size have never suffered yet. At 16 months he is a healthy 30something pounds and he loves his "milkshakes" and we have yet to find a food that he doesn't like!! I think that once we put him on regular liquids he isn't going to be too happy!

Our family is headed to Nicaragua on a vacation/mission trip in about ten days and we are praying for good health for Braden the whole time so that we can all enjoy the trip. We are all very excited about this trip on many levels and know that the Lord will bless it. Please keep our family and our mission team as well as Kim and Nathan (our friends in Nicaragua) in your prayers during our time there.

Here's Braden camping on the Fourth of July!!

Hospital Visit

Outside in the sun!


We had Braden's latest hospital visit yesterday. He had a repeat swallow study done and then an appointment with pulmonology after. His swallow study did not go that well. He was showing signs of penetration of the double thick liquid with most swallows so the radiologist/pathologist did not want to try any thinner liquids. She noticed that he sounded hoarse and my mom (who came along with Braden and I) mentioned that she had been noticing that for a few days now. I had noticed it as well, along with some more raspiness in his breathing over the weekend. The radiologist mentioned that she did not think that his swallowing was regressing but that probably his reflux was the main contributor to these things.

When we saw the pulmonary doctor he also agreed with that theory and has increased Braden's reflux medication. He thinks that the higher dose with be able to keep the reflux under control and therefore not cause irritation and swelling in his throat. With that under control we should notice an improvement over the next two to three weeks. We are hopeful that this is the case and that for now we will be able to continue with thickened feeds with a cup and avoid having a G-tube put in.

We have another appointment scheduled for the middle of September and if all stays stable we will continue with what we are doing for the rest of the summer. We are looking forward to some camping holidays and to being outside in the sun. Braden loves to play outside and he is walking all over the place now. I think he will enjoy the summer!!

Thanks for keeping Braden and our family in your prayers. The support we recieve is such a blessing to us!

Braden is also very thankful for his new little boy cousin on the VP side of the family! All those girls...ahhh now at least he will have a break once in a while!!

Thomas Peter VP was born on Saturday June 17 and after some complications over the weekend has gone home today with his mom and dad and big sister Mariam!

Praise God from whom all blessings flow...

Good News...

Well, since trying our little guy on a cup he has done really well it seems. It has been just over a week since he started with a cup again and so far his lungs seem clear. He has a bit of a cold as well so sometimes he is a little rattly when he breathes but it sounds mostly upper respiratory and not in his lungs.

The plan is to go to his next appointment on June 20 at Children's Hospital and see if there is any more improvement on his swallow study. Based on that the doctor will determine what is next for Braden. Either he will need a stomach tube if the doctor isn't happy with how the study goes or if things start to decline with Braden's breathing, or he will stay on double thick liquids only or possibly we will be able to give him single thick liquids. Single thick liquids obviously would help keep him hydrated better in the summer months and so that would be great. However, it is not worth rushing ahead to a point where Braden's health declines because he is aspirating again.

So far we are very happy with how things are going and we feel very blessed to have such an easy going, happy and healthy "little" guy!

Moving Ahead...

The last few weeks...

It took about two or three weeks for Braden's lungs to clear up after the last time we tried thickened liquids orally. He was obviously aspirating the thickened liquid but we are not sure if it was because he wasn't ready yet or because we had to teach him how to drink again. When we were trying to re-teach Braden how to drink we made the hole in his bottle big enough that the milk would come out easily and this may have increased his risk of aspiration.

Now that his lungs are cleared up again (and now that he is over the flu) :-) we are going to try feeding him orally from a sippy cup. He knows how to drink the thickened liquids from a cup now and so he won't be able to swallow too much at a time hopefully therefore decreasing his risk of aspiration. The doctors have said to try this for four or five days and by then (like last time) we should have a good indication as to how he is handling it.

We are hoping that this goes well and that we can continue to see improvement in Braden's condition. It is always comforting for us to see some improvement so that we know it is moving in the right direction.

All things are in God's hand and we put our hope and trust in Him.

A little setback

So since our last post we have tried thickened milk for Braden and after a few days of persistance he took to the bottle quite well. We started with a cup but he couldn't get the hang of it. It was going well for a couple of days and then we started noticing signs of aspiration again. Braden was starting to sound wheezy and noisy with his breathing and he was coughing a bit again too. It got progressively worse over the beginning of this week and after talking with the nurse at Children's hospital and with the advice of the pediatrician we put Braden's ng tube back in on Wednesday. We had taken it out on Monday after realizing that we were able to keep him hydrated with the thickened milk. So at least he got a bit of a reprieve from the tube taped to his face but not long enough as far as we are concerned.

It has been a dissapointment after having some brief hope that he might be getting better even quicker than we thought he would but I guess it was too good to be true :-)

We will be patient and continue with the tube feedings for a couple of weeks and see how long it takes for his lungs to clear up. After that we will see if we try a bottle again or just wait until we go back for another follow up appointment at Childrens in June.

Thank you for all the continued support we receive! It is a blessing to us and very much appreciated!

Our Appointments

Here is Braden at Children's Hospital. We had lunch outside in the beautiful sunshine!

Today we were at Children's Hospital for Braden's scheduled follow-up VFSS (video fluoroscopic swallow study) appointment and his appointment at the pulmonary (lung) clinic. We first went to have his swallow study done this morning and we can report that Braden has made significant progress in the last two months. He is not better, but there is change and that is what we were hoping for (best case scenario). It is sometimes difficult to wait patiently for a developmental change when we cannot see progress on a daily basis. We have to wait until we can see it on a screen during his tests every couply of months and in the meantime we just continue with his care as directed by his doctors and hope that it is making a difference. Well today I would say that yes, the last two months have made a difference. In the last week (unfortunately) Braden ended up with a double ear infection and also needed to go in for his 12 month shots and because of that we had two doctor appts last week with the pediatrician and of course another one today. However, the good news is that at all three appts we were told that his breathing has never been better and that his lungs sound perfectly clear with no wheezing! This is a big change in itself and one that we had noticed improvement in over the last six weeks. We are so thankful and feel so blessed to know that many of you have been praying for Braden and that those prayers have made a difference!

As far as the appt's went, after his swallow study he then went to see the doctor at the pulmonary clinic this afternoon. The doctor was very pleased with Braden's progress and said that it didn't surprise him to see this change for the better. Usually at about 12 (to 18) months is when they expect to see some progress and advancement in developmental swallow problems. I am sure they have told us this before but you don't want to count on something like that because each child is so different and develops at their own rate, as well as that the stats for a condition like this are very few.

So, Braden has made progress and it is something like this (without getting into too much medical jargon):

At his last swallow study two months ago Braden had some trouble swallowing double thick liquids and he had lots of trouble swallowing single thick liquids.

Today they started with single thick liquids and he proceeded to swallow about twenty to thirty swallows with only one small incidence of micro-aspiration. He did not remember how to suck from a cup with a lid but we managed to syringe some of the liquid in and used a regular cup to pour one swallow at a time into his mouth. That one aspiration was a trace of single-thick liquid that went into his lungs. Not great of course, but a big improvement from last time. One of the unfortunate things about the aspiration is that Braden has always been labeled as a silent aspirator which means that if it were you or I were aspirating that liquid we would start coughing. He does not have that reaction and this is a danger obviously because it means that we don't know when he is aspirating (except for when he is being x-rayed).

In light of these test results the doctor would like to start Braden on double thickened milk from a cup and continue to keep the NG tube in (yay, no stomach tube for now) for supplementing with water for hydration purposes. There is a strong possibility of dehydration with a diet of double thick liquids.

Our follow up appointments will again be in two months and we are hopeful that at that time his swallowing has improved enough to put him on single thick liquids and take the NG tube out for good. However, if at that time he is not able to progress to single thick liquids, the doctor did say he will need a stomach tube because he cannot keep the NG tube in for any longer than six months.

For now we are so thankful for this progress and for the answers to our prayers, as well as for all the support we continue to receive!

The text from Braden's birth announcement:

"Give thanks to the Lord for He is good, His love endures forever."

Pslam 107:1

A little more Info...

Here is Braden walking with his IV Pole.

Braden's condition(s):

Dysphagia - Swallowing difficulty
GERD - Gastroesophageal Reflux Disease

High Risk for :
Descending and Ascending aspiration
-caused by swallowing problems and the inability to protect the airway.
-this should be a developmental thing. In time he will outgrow it is what
the doctors are hoping, although they don't know why Braden is doing this.
There doesn't seem to be a cause and by this age swallowing should be an
involuntary reflex.

Chronic Lung Disease
- once the lungs have damage (scar tissue) it will have life long consequences.
- aspirating stomach contents because of reflux can be very damaging to the
lungs because of the acids. It can also damage the vocal cords and larynx
which would explain why Braden had a hoarse voice/cry. That seems to
repair itself over time.

Our Little Guy!

Ok - I thought it might be a good idea to set up this blog for those of you who would like to hear Braden's story. I know many of you allready have been on this journey with us for six months or so and are very familiar with what is happening in our family. We are so thankful for the many, many wonderful friends and family we have surrounding us and praying for Braden's health and for strength for the rest of our family. It is such a blessing for us to be able to count on many of you to be there when we need it the most. Here is a way for us to keep all of you updated at the same time (amazing!!).

I am not sure where to start but I think this is a good beginning...

Our family: Brad and Kristi,
Elyssa (8), Shayna (5), Braden (1)


Braden joined our family last April (so it seems fitting to start this blog in April). He was born five weeks premature, not that we expected anything different as I have always had difficult pregnancies with premature babies. However, the difference between most premature babies and our is that they are Kuik's! For some that says it all! Well, I suppose what I mean is that our babies were all born at good weights for being early. Braden was no exception. He weighed 6lbs 12oz which the doctors were very happy with. He was healthy and doing well so we were home in just a couple of days.

When Braden was about three or four months old we started noticing that he had asthmatic symptoms. Asthma tends to run in the family (Brad and Elyssa both have it). We kept an eye on it and at his next check-up I mentioned it to the doctor. She listened to him and since I mentioned that it had been going on for a while allready she suggested we start Braden on some inhalers. These were just regular inhalers with a mask spacer (no nebulizer) and he took them well. After a number of weeks (?) I mentioned to the doctor that he didn't seem to be making any improvements and that he sounded just as congested and wheezy as before. He had a bark to his cough and we started noticing that he had a hoarse voice when he would cry. I asked the doctor if we should try a nebulizer because maybe he wasn't getting the medication properly via the mask and inhaler. She really didn't think that would make any difference and at that time she started asking a few more questions, like when (what time of day) did he sound the worst, or when did we notice it the most. When I talked to the doctor I told her that I knew this wasn't normal. So many people would ask me what was wrong with him only by listening to his breathing! He sounded "croup" like and had asthmatic symptoms off and on all day long. Of course when I happened to be at the doctors guess what?!? (hint: it's like when you bring your car to the mechanic). Right, so he didn't necessarily have his symptoms on command but I did mention that it was always worse after he drank his bottle and that by the end of the day we couldn't even hold him when he drank his bottle because he seemed so upset and frustrated. He would cough and choke but he did seem better when we would let him sit in a reclined baby seat and drink by himself. Braden was about five and a half months or so at this time.


I guess at this point the doctor must have had her thoughts as to what this was and so she sent us to St.Joseph's Hospital for an upper GI test. I thought it seemed like an overreaction at the time and that she was way overplaying this. (I guess I was concerned but not overly worried). Braden was gaining weight and was a very happy and easy going little baby for the most part. We had the tests done and I basically forgot about them for a few days because when we left St.Joseph's the radiologist gave me the impression that all was well.


About five days later our doctor called us and asked us if we had received a call from anyone yet about Braden's tests. I kind of blanked for a moment and then told her no but the radiologist said that they went well. "Well," she said, "the results came back abnormal". Oh. That shocked me. She proceeded to say that she would like us to take Braden to Children's Hospital for more testing. She knew a very good pulmonologist (lung doctor) there that he could see and she also wanted him to have a VFSS (Video Fluroscopic Swallowing Study) done. She told us then that she believed he was aspirating liquid (formula) into his lungs while he was drinking. At that point the Pulmonology Clinic at Children's was booking appointments two months out and our recommended doctor said to Braden's pediatrician that he could only see him sooner if he had a head CT done first and that it came back clear (meaning no brain tumors). So we then had to book an appointment for Braden at St.Joe's again for a head CT. Our pediatrician is so great and she worked so hard at getting our appointments as quickly as she could so that we would avoid as much waiting for anwers as possible. She made us an appointment a day later for the CT scan and we were given clear results from this test about 24 hours later. We were so thankful that God answered those prayers. I couldn't imagine ever getting the news that your precious little baby has a tumor.

Well, as this seems to be a long story I will recap the next several weeks rather quickly. We went to Children's Hospital and received excellent care. It was indeed a swallowing dysfunction that Braden had and so they suggested starting him on thickened liquids. When that didn't make a difference we proceeded to double thick (like runny pudding). Initially that made an improvement but after a couple of days he started showing his usually signs of aspirating. Choking, and coughing while drinking and wet, congested breathing after. The doctors told us that our next option would be an NG feeding tube. Braden was admitted to St Joe's overnight in December and had his NG tube put in. Of course, he then proceeded to take it out and that is when we were shown a few times how to reinsert the tube. I had a very hard time with the thought of having to put the feeding tube back in and I think I had some very panicky moments at the hospital just thinking of dealing with all of this. Until you are faced with it there isn't much to prepare you for it. Brad reassured me that I wouldn't have to deal with putting Braden's tube back in if I didn't think I could handle it (by the way, putting the tube in is the least pleasant thing about the whole tube feeding). What a wonderful husband I have. He knew how to relieve the pressure I was feeling at that moment and it seemed to make a great difference. It was in those moments that we were reminded that the Lord will only give us what we can handle and so we knew that He would equip us with what we needed to take care of our little guy. God is good and we were so thankful to have Braden home and that so thankful also that he took to his tube feeding really well. The doctor's also started him on a daily 15mg dose of Prevacid because Braden was high risk for descending (drinking) as well as ascending (reflux) aspiration.

Since December we have been back to Children's Hospital once in February (on Valentine's Day) and at that time we were told that they did not see any improvement in Braden's condition. That was very disappointing news as two months of tube feedings had gone by and we assumed that it must be making a difference. Now we know that the difference it was making was that his lungs were being protected and that was the best thing for him. It didn't help that during those two months Braden had numerous bad colds and had some very difficult breathing episodes (which required some Prednisone). We are so thankful for the fact that our insurance covered Synagis shots every 28 days during this time as well and on into March because I do believe that this helped prevent his colds from turning into RSV or phnemonia. He was high risk but now it seems like cold and flu season is coming to an end and we couldn't be happier about that. The Lord has spared Braden and us from any hospital stays this winter, which is a wonderful thing!!

We are now about a week from Braden's next visit to Children's Hospital for another VFSS as well as a visit with the Pulmonologist. We were told last time that if there is still no improvement in his swallow then they are going to put in a G-tube, which is a gastro-intestinal tube surgically put into his stomach. However, if they notice improvement in his swallowing then they would like to leave the NG tube in for another two months with the hope that Braden could be weaned off of it and on to thickened liquids. I have been told that the stomach tube is easy to feed through and nicer in the fact that nobody can see it because it is under his shirt. But with anything new, the unknown seems worse than the known. We are quite used to the new normal of NG tube feeding that this seems like the better option to us. However, like in all things, the Lord knows best and because of that we know He will also give us what we need in all situations.


At this time we ask for your prayers for Braden and for the doctors that are caring for him, for improvement in his condition and ultimately for Braden's restored health. We are thankful to our Heavenly Father for the care He has shown us through these last months and we are assured of His continued care over us and especially over Braden.


That's it for now! A lot longer than I thought it would be :)