Two steps forward, one step back

We almost made it to a year. February passed and we were good. We had almost made it to September, yet there we were with Jay-Are in the hospital yet again with yet another bowel obstruction. Frustrating and scary and irritating and expected... Isn't that sad when you expect to go back to the hospital yet again?

The day started out ominously when Jay-Are woke up with severe stomach pains. While stomach pain is not unusual when you have been cut open the number of times he has, it usually is pretty obvious when it is a more worrisome type of pain. Bug and I left him home to rest while we went to church, but by the time we got home he still wasn't doing real great. We played it pretty low key for the day so that he could rest, but come 4pm or so it was obvious where this was heading. 

So we got ready for another round of this. Unfortunately we are old pros, so we got the Gameboy and the phone charger and changes of underwear, all those things you don't really think about until you need them. Jay-Are being the person that he is made sure to take the time to mow the front lawn before he would let us leave, because "if I'm going to be stuck in the hospital for a week, I don't want you to have to worry about it." Then we dropped bug off at our friends house that we are blessed to have live just down the block from us, and they offered to watch bug for us while we went to get Jay-Are checked out.

Once we finally got to the hospital it was slow going to get checked in. Who knew that 6pm on a Sunday night was a busy ER time? About an hour later Jay-Are was finally triaged and settled in with some pain and nausea medicine. They took him in to get an x-ray which as we expected showed something that could be a blockage. So off to CT. Based on all this information the recommendation was to keep him at a minimum of overnight to try and get the blockage to break up on its own, so they put him on NPO (Nothing by Mouth) and had him on IV fluids. They called in to the surgeon who did his last 2 surgeries and he will come and visit him the next day.

When we were getting transported to the room from the ER the transporter asked us if we had a room named after us yet after we told him how often we were in. You would think, but apparently just giving money to the hospital as a patient and not as a donation doesn't count!

In good spirits at least!

Always silly....

Monday mostly consisted of watching and waiting. For the good part of the day Jay-Are remained on fluids only, and then to a liquid diet. For dinner he was up to a soft diet, watching and waiting to see how his body handled things. The biggest challenge of the day by far was that he also was fighting a migraine, so it was hard for us to tell if the nausea was from that or from the food intake. The doctors decided to keep him another night at this point just so they could make sure.

Tuesday he got to go home! The blockage had broken up enough that the doctors felt comfortable sending him home.  Basically we were told that at this point in time they aren't going to operate unless it gets to the point of an emergency due to the amount of scar tissue that he has from previous surgeries.  For awhile he will be on a soft diet in order to help make sure things are still good, then back to normal, with the hope that this won't happen again anytime soon!

The most frustrating thing about this is that there is essentially nothing that we can do in order to prevent these blockages from happening. As a result of the HHT/JPS Jay-Are doesn't have a large intestine (colon) this means that he has all that extra room for his small intestine to float about, which then can get caught on all the scar tissue that he has from previous surgeries.

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!