Bug's First Endoscopy/Colonoscopy

December 19 was the day! We went in to get Bug's upper endoscopy and colonoscopy at Children's Hospital.

The day before was no fun to say the least. She was unable to do anything other than eat and drink "clear" liquids. She also had to drink 64 oz of Gatorade with 1 bottle of Miralax mixed in. We did our best to make it fun. We ate lots of popsicles, made snow cones out of Gatorade ice cubes, and tried jello (she didn't like it) along with just drinking Gatorade.  She was a trooper and did a really good job with not complaining too much about being hungry and sticking to no purple and no red popsicles.

Our procedure was scheduled for 12 noon and we were supposed to be there by 10am. We got there around 9:30am as the roads were a little iffy, and we wanted to make sure that we were safe. When we got there and while we waited we got to meet Santa! She even got a present, a baby doll, which she was very excited about.

Holding the Soldier's Hand

We got to meet Santa!

Once we got called back at 10am we got to wait and watch a movie. She chose Home Alone, one of her favorites. After we watched some of that she found the play room with dad and got to bring some Hot Wheels back to the room to play with.  Children's does a great job of coming and explaining everything that will happen. So we got to during this time talk to not only our GI doctor, but also to a Child Life Specialist (they explain everything to the child so they won't be scared and show them pictures of what the room will look like etc.) as well as we talked to the anesthesiologist.

We found the playroom and some cars

Watching Home Alone while we wait

Right on schedule at 12 noon they wheeled her back and as she left she was giving everyone princess waves, so I felt confident that she was in good spirits and not scared. They told us that it would be about 45 minutes for the procedure, after 2 hours Dr. T came to talk to us. At that point I knew something had gone wrong, as it had taken too long, but not so wrong that they felt they need to come get us early. As I thought the procedure was finished, but they had some complications. The endoscopy was uneventful, but the colonoscopy was not. While she was doing the scope she said it felt as if someone was tugging on the camera. When she pulled the scope out, blood came with it. To be safe they had the GI surgeon come and take a look. What had happened was a hemangioma had formed (like a blood blister). She also had taken out a large clump of polyps that was  approximately 2 inches around and had to get close to the intestine to remove it, which had some potential for perforation. There was also about 20 other polyps in there that we will keep an eye on. All of this together meant that they wanted us to stay the night to keep an eye on things so that if something should go wrong we would be in the right spot.

Bobo & Titi sent us balloons!

In our room resting after our procedure

Once we were back in our room she got to eat after about an hour and watch movies. We rested for a while, at some point she needed to use the restroom, so I picked her up to head that direction. When we did that I felt liquid, at first I thought she had to go so bad that she couldn't hold it, but it turned out to be blood. Luckily the nurse as well as the nurse practitioner was there at that moment, so they reassured us that it was alright. This continued for a couple hours before the bleeding finally seemed to stop. All said and done she lost about 5-6 oz of blood, but the pediatrician on staff said that it was the amount they would expect to bleed out of the hemangioma, so as long as it stayed stopped, then they were not too worried about it. He had however gotten all the appropriate doctors up to speed just in case. Due to the bleeding they did put her back on no food and gave her and IV to keep her hydrated. So she was very hungry, but all in all we were able to distract her with movies. We did get up to go for a walk, although she was pretty unsteady on her feet, so it didn't last very long.

Out for a walk (it didn't last long)

After a "good" nights sleep (or at least some sleep) we were up and had some color in her cheeks which was a good thing. Since the bleeding had stopped, she finally got to eat and she was very excited about that. Once we finally got the all clear to go home, we waited for awhile, and watched yet another movie. We got home in the late afternoon and spent the rest of the day resting.

Finally getting to eat! She was HUNGRY!

Even Cupcake was glad to see her home!

Going Home!

Within a couple of days we were back to normal and hopefully we will remain so for awhile! The biopsy results from the polyps removed came back as normal, so that is good. We will have a follow up appointment in January to talk about next steps with Dr. T. Until then we continue on, like we always do!

And So It Begins...

Both Bug and Jay-Are have JPS (Juvenile Polyp Syndrome) as a part of their HHT (Hereditary Hemorrhagic Telangiectasia) / in addition to their HHT. This is caused by the specific genetic mutation that they have; which is SMAD4. We know this as we have done the genetic tests to confirm as much. As a result of this we know without a doubt that Bug will have polyps in her GI tract (Jay-Are has this as well and has had several surgeries as a result in the past as well as he gets yearly screening). It is just a matter of fact, and one that we have accepted. What we did not know is how soon those will appear and the extent of what is to come. This means that part of our reality is that there is a very real possibility that one day Bug will have to have her colon removed just like Jay-Are did, but hopefully not, and if so, hopefully for not many years to come.

In order to make sure that things are in the right hands we have a GI Specialist that we see once a year (Dr. T). Dr. T is awesome and does a really good job of helping us to understand what we should and should not do in order to be as preventative as we can in our situation. For us that includes Bug taking MiraLAX on a normal basis to ensure that her stool remains soft, and watching for blood in her stool (yes we look at every single one, oh the joys of parenthood).

Recently the second came to light. There was blood in her stool two different times, in a short amount of time (within two days of each other the week before Thanksgiving). For most parents this would probably be extremely frightening. For us, unfortunately it was expected, and as I mentioned, something we are always watching for. As a result, we called Dr. T and let her know what was going on and she got us in for an appointment this week on Tuesday. At that appointment she told us what we already knew, but did not really want to hear. If there is blood, then there is probably a polyp bothering her, which means that we have to be invasive much sooner than we wanted to. Up until now the plan had been to observe and monitor and be as non-invasive as possible. With this new development, plans have changed.

What this means for us now is that Dr. T will need to start looking on the inside to see what is going on. So long story short, we will be doing an upper endoscopy and colonoscopy the week of December 19 at Children's Hospital. From there we hopefully will have a better idea of what is happening on the inside and be able to formulate a plan from there! I will keep you posted once that has happened, but wanted to make sure to keep things up to date for those that were interested! 

Children's Hospital - Again...

In June of 2015, we were headed back to Children's Hospital to get miss Bug's pulmonary AVM's plugged. This by far was probably much more scary for mom and dad then for her. This procedure was done via a cardiac catheter that was inserted in the artery near her groin, went up through her heart and then into her lung to put a small coil into the AVM to essentially block the blood running to the malformation.

We had to be at the hospital bright and early at 6am for check in. They did the preliminary blood work etc, explained to her what was going to happen (Children's Hospital is amazing about doing this) and then we said our goodbyes and they wheeled her back.

To our surprise one of our pastor's from church came and sat with us until she was back and settled. It was wonderful to have him come and pray with us all, and he and his wife even brought Bug a little gift which was so sweet.

Once she was back and in the procedure we got a phone call from the cath lab letting us know that she was all settled. She was a little scared once they got there, but was a trooper and went down easy after a little more talking. The procedure itself was about a two and a half hours long and they called us about once an hour to keep us posted. Once she was done and in the recovery room she apparently woke up and had to go potty, but refused to use the diaper they had put her in (we had just recently potty trained, and once she was potty trained there was no going back!). So they had to pick her up and keep her leg as straight as they could to let her go. She is clearly my child...

After we finally got to our room we had six hours of laying flat. When they originally had told us about this part, I being her mother, was a bit skeptical as to how we were supposed to get a three year old to sit still and lay flat for that long. Amazingly though, she did with the help of lots of movies and lots of popsicles.

After another night in the hospital and another heart echo, we were ready to go home once again! This procedure made an amazing difference for her. Prior to the AVM being plugged her blood oxygen levels on average were running around 91% (a normal level should be around 98%), after the plug they almost immediately jumped to 98%! A HUGE difference. I didn't think she could possibly have more energy, but she does now! :)

Hopefully the other small pulmonary AVM's that she has will never grow, but we will have to keep an eye on them over the years. For now we are happy to have a for all things considered very happy and healthy little girl.

All checked in and ready for our procedure!

Laying flat for 6 hours

Up and walking the halls

Headed home in style

We are well loved for sure!

Tests, Tests, and More Tests

Day 1 in the hospital was mainly just hanging out and getting vitals etc., as we did not get checked in until late afternoon.

Day 2 the doctor’s performed an ultrasound/echo of Bug’s heart, to make sure that everything looked good there. After that came back clear we were basically going to be discharged, as they did not know what was going on, however on the back end our doctor was advocating for them to do more chest x-rays in order to see the hazy spot that they had originally seen the day before. Once the x-rays came back it was determined that she would get a CT and potentially and MRI the following day, since she had been eating all day and they would have to put her under sedation, they had to wait. Given that her Jay-Are has a history of pulmonary AVM’s (Arteriovenous Malformations https://en.wikipedia.org/wiki/Arteriovenous_malformation) which are a result of HHT (Hereditary hemorrhagic telangiectasia https://en.wikipedia.org/wiki/Hereditary_hemorrhagic_telangiectasia ), we knew what we were looking for. The hazy area that was showing up on Bug’s lung was most likely the result of a pulmonary AVM, however the only way for us to know for sure was to do all of the tests. If the CT did come back positive for a pulmonary AVM, then the next step would be the MRI in order to check for AVM’s in her brain and liver, hence the need to put her under sedation.

Always such a happy girl!

Day 3 we were scheduled for a CT and potential MRI at 5pm. The bad part about this was that bug was not able to eat all day as they were going to put her under sedation for the procedures. After a long day of waiting and a very cranky, but for the most part distracted little girl (thank you playroom!), the CT happened as planned. This for mom and dad was by far the hardest thing that we have ever had to do. They had us hold her while they were putting her to sleep via her IV, and when she went limp in my arms all I could do was start to cry. Once the CT came back as positive for pulmonary AVM’s the next step was that they were going to do the MRI to rule out any AVM’s in her brain or liver which are the other 2 most common places that AVM’s form. 2 hours later and more than a few tears from mom and dad, luckily everything came back clear from the MRI, and there were no additional AVM’s in other areas of her body.

Ready to go home!

Day 4 meant results, and with them tons of new doctors to talk to. We talked to in the span of a few hours a cardiologist, geneticist, and regular pediatrician. After many conversations and more than a little bit of information, our next steps for the most part was follow up appointments. This meant us going to see the geneticist as well as setting up an appointment to have Bug’s pulmonary AVM’s taken care of. So after 4 days in the hospital, and finally some answers, we were ready to go home!