Hershey and Mia

I realized as this week has gone on that some of our friends and family who read the blog are not on facebook and therefore have no idea about the rollercoaster of the past week.  So let me catch up our friends and then I have a million pictures!!!

So last Sunday started like any other day. We got up and were playing around before starting some errands and chores we needed to get done. Bruce and Alex had just left to get a haircut when I found Hershey in my bedroom having a massive seizure. I won't go into details, but it was bad enough that we did not think he would live through the day. He spent 4 hours unresponsive, unable to move and drooling uncontrollably. He did improve as the day went on and was even a little better by Monday morning. I took Hersh to the vet on Monday morning. He examined Hersh and determined that along with the seizure he had had a mild stroke. Based on blood work and some pretty extensive weight loss over the past year, it appears that Hersh may have cancer. We are enjoying what ever time we have left with him and spoiling him rotten!

Knowing that our dogs (Both Hayley and Hershey) were reaching the end of their lives based on years, we had been talking about getting a new puppy. We knew the loss of one or both of the dogs would be very hard on all of us, but especially on Alex who has already lost so much in his life. Our breeder (www.labpups.com), Tripper had recently been posting pictures of some new litters. I had been eyeing them and convincing Bruce we needed a new little one. After Sunday and Monday, we decided to just jump in and do it. We looked at some pictures and talked to Tripper multiple times about the traits we most wanted in a new puppy. From the first set of pics on, Alex fell in love with one little female and never waivered. After talking to Tripper, we also found her to be the perfect fit personality wise. We asked Tripper for only 3 things. One, that the pup be very loyal to Alex. That he or she cuddle with him when he he wasn't feeling great and play with him when he is feeling good. Two, that a pup be affectionate and three, smart. Tripper assured us that the puppy that Alex fell in love with perfectly fit this description. What he didn't tell us is how calm she is! On Tuesday we made the decision to buy our precious Mia. She came home to us yesterday and has been more then we could have asked for. From the airport, to the car, to home she has been awesome. She has not barked a single time. Is giving clear signals when she needs to go out and has not left Alex's side. She slept with all night and he woke up to cuddles and kisses.  I think the pictures will tell the story!

Alex and Mia meeting

 

Alex and Mia with Brooke, the awesome girl who brought her

 

The ride home

 

Best Buddies Already

 

 

She has such a sweet face

 

She really likes Hayley!

 

This is how I found them 5 minutes after putting them to bed

 

Cook Children's Hospital

I want to give an update, but let me start by clarifying something. We are still using Children's Memorial Hermann Hospital in Houston for most of our care. We have only transferred our GI care. Because Alex was coming in for a GI issue we came to Cook's. In the future if Alex is "sick" we will head to Houston. If he has signs of Pancreatitis or another GI issue we will come to Cook's.

Ok...on to this stay. Let me back up for the followers who are not friends on facebook. Early on Thursday, it was decided that it was not safe to restart Alex's TPN at home as planned. The doctors, nurses, dieticians and pharmacists felt that Alex is too "fragile and unstable" amd at too high of a risk for refeeding syndrome for us to stay safely at home. Refeeding syndrome occurs when you introduce substantial nutrition to a severely malnourished patient. it can cause critical electrolyte imbalances that have to be corrected immediately.  So we got several phone calls on Thursday telling us not to start TPN and to set up an admission for Friday. Yesterday, Alex and I were packed and ready at 8:00 AM since we weren't sure when we would get the call to head in. We waited and waited and waited and waited some more. I spoke tot he GI nurse a few times and knew that there were no beds on the GI floor. They did not want Alex on a different unit with potentially sick kids. We finally got the call to head in at 4:45. We were told the room would be ready in 30 minutes. We got to registration and signed our papers at 5:30. But instead of taking us up to the room we had to wait until almost 8:00 last night to get to our room. Definitely not the start I was hoping for. BUT...since getting to a room I have been very happy with every aspect of Alex's care!
Alex's nurse last night was so much fun! She reminded us of one of the our favorite child life girls from Houston (Love you, Kimmie!). Our nurse and the resource nurse were both so careful going over every aspect of Alex's care. There was absolutely no issue with using our home meds (I fight I was prepared to have). There system was great. They took our meds to pharmacy. Pharmacy draws up the meds and labels them. They even say, "patient's own liquid". This way there are no mistakes with pharmacy sending "their" meds. Dr. O had ordered TPN early in the day (long before we were admitted) so it would be ready for Alex. They asked lots of questions as they tried to figure out my confusing boy! Twice when potential allergy concerns came up, they put the brakes on until we had the answers to proceed safely. They brought me copies of Alex's labs (he's had labs drawn twice) without my ever asking for them. They are extremely considerate. When Alex lied down for a nap today, they did everything possible to finish all they needed to before nap time so they wouldn't have to disturb us. Overall, a good experience so far.

As for medically, Alex's labs so far show that his electrolytes are stable. We have been warned it is day two we are worried about. Hopefully, my little man will behave himself tomorrow! Based on the labs from last week, Dr. O has had to start yet another supplement because now he is also deficient in zinc. They continue to be concerned about how many vitamins and minerals he is not absorbing. Also, he started coughing this morning. It is not often, but it doesn't sound pretty. His cbc from last night looks as if he has some sort of virus. I am keeping a close eye on my little man. Seeing that cbc gives me the longing to be back in Houston in my comfort zone with nurses and doctors who "know" Alex and how closely you have to watch him. But I have no doubt that if I need to step in on my little man's behalf, I will be heard.

Assuming electrolytes stay stable (and Alex doesn't get sick) the plan is to discharge Monday or Tuesday.
Ali

A Very Productive Appointment

As I had posted last time, we were waiting to see a new GI doctor, specifically a motility specialist! While I was excited to see what new ideas Dr. O would come up with to help Alex, I always dread the thought of a new doctor. Those of you who have walked this journey with us for a while can imagine how daunting the thought of giving a medical history is! Anyway, Alex and I headed into Fort Worth early Thursday morning for what would turn out to be a marathon of an appointment. I am not quite sure I would even be able to chronologically go through the appointment (we were there 5 hours) so I am just going to summarize the results/plan. So this should be pretty short and to the point!

Dr. O's main concern at this point is that Alex is "SEVERELY malnourished". After his exam he was extrememly concerned. Alex has had some skin discoloration on his face and neck that I have asked a million doctors about. Apparently it is a severe vitamin deficiency. We are running a bunch of tests, but his feeling is that Alex is not absorbing any fats. If you don't absorb fats you don't absorb the fat soluble vitamins (A, D, E, K).  One of the main causes of this is pancreatic insufficiency. Alex has now had 7 episodes of acute pancreatitis. Some lasting months. Each time you have pancreatitis you damage the pancreas. It would not be shocking for Alex to be PI. What is shocking is that he has never been tested! If that is the case, we will replace pancreatic enzymes. In the short term, he is starting TPN/Lipids Monday. Dr. O is letting us start at home (vs. being admitted. Love him). We will run labs everyday while we make sure he is adjusting well.

Concern two is that Alex is always VERY distended. His xrays all show his intestines to be full of gas. We have never been able to address this problem adequately. We have used antibiotics sporadically to treat small bowel bacterial overgrowth, but never on a regular basis. We are starting one antibiotic to use all the time and a second one we will use the first 10 days of every month in hopes of helping this problem.

Once we are sure he is okay with the new antibiotic from an allergy standpoint, we need to start some very specialized vitamins. They are a prescription vitamin that are usually used with Cystic fibrosis patients. They are fat soluble vitamins that are water soluble. Basically they are fat soluble vitamins that you don't need to absorb fat to absorb the vitamins. We are having a hard time finding a form that has no corn in it, but we think we have found one. Regardless, we have to try and hope he doesn't have an allergic reaction bc we have to get these vitmains into him.

Down the road, they would also like us to try a different formula that could potentially get some more calories, fat and protein in him without needing to increase his feeding rate (which we can't).

Concern three is Alex's daily stomach pain. Dr. O feels like a large part of his pain is the constant gas and distention. Hopefully, the antibiotics will help. We are also trying a new feeding set up. We will continue to drain his stomach with a farrell bag. We are also now feeding his Jtube "through" a farrell bag. It allows Alex's intestine to "push" any formula or air it can't handle back into the farrell bag until the pressure lowers and then it goes back in. It is almost like a release valve or escape. I was concerned that we would just wind up with a farrell bag full of formula, but so far it is working exactly as it should. The hardest part is keeping the farrell bag well above his head while he gets around.  I just love that Dr. O had so many new ideas that had never been tried.

Concern four is the amount of output Alex has from his Stomach. This has always been a problem. The only time we saw any improvement was after Alex's last pyloric dilation. Dr. O is going to go in and do another pyloric dilation and use botox to help it last longer/work better.  This will also give him the opportunity to scope him and see how his esophagus, stomach and duodenum look.

We triaged liver and reflux until next appointment! We will go back in a month to see how the changes are working and what needs to be tweaked. I was so impressed with teh amount we got accomplished as well as the caring, compassion and kindness his entire staff treated us with.
We look forward to possibilities of Alex feeling better adn "doing" better bc of this team.

Ali