Another Update on Hannah
It is hard to figure out where to start with this update but I suppose I should start by thanking everyone for their prayers and support. So many people helped make our quick stay back home go much smoother than anticipated. I am sorry for the huge delay in getting this information out to everyone but life seems to be going in one great blur right now.
Our trip flight back was pretty uneventful considering how young our children are and the flight length/layovers. We actually had a layover in Fort Lauderdale for 14 hours so my mom drove 5 hours and got a hotel just to see us. I am sure it was a five hour drive well worth it for her because I KNOW it was for us. It was great getting to see her even if for a short time. She picked us up at the airport and took us out to breakfast at the closest IHOP. The kids were super excited about eating but I think Caleb was more impressed with the bathrooms as he came out saying, “ MOM! That bathroom had toilet paper and toilet seats!” – He then looked at the waitress and told her she had a really nice bathroom and he liked it a lot – WHICH IS HILARIOUS since it was a rundown IHOP at that. Oh, I could go on and on about the ridiculously funny stories we have about the kids experiencing the U.S. for the first time in a year…which feels like forever to a three (or now four) year old.
We spent the day eating food we had not had in a while – I think we hit up several fast food places. My mom did come prepared though with a fridge FULL of goodies. The kids were in heaven and so was I with my ice cold Dr. Pepper. I am not even a pop drinker but after a year I was grateful to see some DP. We had a fabulous time at the beach and the kids did not want to leave. My Mom is AMAZING and I am so glad we had the layovers on both ends of our trip. Our time in Florida made for the perfect beginning and perfect ending to our trip. Love you Mom – you are an amazing woman.
We got into Denver late Sunday night, having left Friday morning we were happy to be at our final destination. Just was we were getting into the elevator to meet our family Caleb got sick all over the place – you know just the “perfect” ending to our trip. Really, though it was no big deal seeing as everything else went so well – prayers appreciated here because it could have been much worse.
We got in on Sunday and had our appointment on Tuesday to meet with the GI doctor for Hannah. From Tuesday on most of our time was spent driving to Denver, which was about one and a half hours from our home base, going to appointments and waiting for results. To make a long and emotional story severely short we are still not exactly sure what is going on with Hannah. We had wonderful doctors who expedited us through the system getting us all types of appointments and running all kinds of tests. Hannah did have a colonoscopy and endoscopy where they did find some swelling in her colon. This coupled with other tests is leading the docs to think we are dealing with some sort of inflammatory bowel disease such as crohns. Since it is really abnormal to have this at such a young age (age of normal diagnosis is between 15-30 years of age) the docs wanted us to see an immunologist just to make sure there were no other autoimmune things going on. As we were waiting to see the immunologist Hannah’s stool cultures returned positive for campylobacter bacteria. This bacterium can also give the same results on a colonoscopy as inflammatory bowel disease. So at this point we do not know whether her results were tainted by the bacteria or there is something else going on. This was incredibly frustrating. It is technically in the realm of possibility that Hannah has had campylobacter since before we left to come to Peru last year but it is not probable as campylobacter usually resolves itself after a short period of time. Hannah has had a few rounds of antibiotics since being in Peru as well and we think this should have taken care of this type of infection, but this would be a good reason as to why she is not growing. Results from the immunologist suggest that Hannah does not have any underlying autoimmune problems and we are thankful for this.
In the middle of all this we wanted to get Hudson some shots to keep him up to date and we decided to go ahead and do stool samples for the all the kids since campylobacter is highly contagious. Hudson came back positive and Caleb came back negative. This made total sense because Huddy was having such a tough time while we were home. I won’t go into details but campylobacter means I changed A LOT of diapers – enough said. So Hannah and Huddy were on antibiotics for a while and then we stool checked them again and they had Clostridium Discophiles (or C-diff). This is kinda common to have after exposure to antibiotics, but totally not something you want to have while you are traveling with small children.
Up until the day we left we were chatting with docs about whether or not it was safe for us to come back to Peru and even though both the kiddos were really sick they said it was okay to return. At this point they cannot do much more for us as there is no straight up test for inflammatory bowel or crohns. So here is what our future looks like right now. Hannah has to gain weight. She does not have to be in the 90 percentile but she has to have an upward curve. The docs want us to really get Hannah eating well for the next two months. We do weight checks every week and stool cultures every two weeks to make sure she is not getting re-infected with ANYTHING. This sounds well and dandy but it is much harder than it sounds. Hannah has no appetite – which I consider strange for a two year old. You can put candy or whatever you want in front of that girl and she will not eat it. Even at the IHOP, after not eating on the plane, when pancakes with strawberries and ice-cream were put in front of her she never even touch it. Gratefully, her appetite appears to be slightly better this week but still I have to sit with her and feed her EVERY bite – yes, every single one- just so she will eat. Our meals take hours because I am also doing this for Huddy too since he is still a baby. In addition to this, while we were in the States we found out that Hudson has started to take a dive off of the growth curve as well (this could be due to travel, teething or a variety of things) at just the same age Hannah did and he also appears to be iron deficient. He is iron deficient but not iron deficient anemic which is worse and often at his age means cancer. So we are grateful, at least at this point no cancer for any of our kids.
***Sigh of relief*** We had lots of appointments at Children’s and after seeing the little kids with chest tubes and no hair I am feeling really grateful and blessed. Yup, I shed lots of tears this trip…
Back to eating for Hannah – so she must eat LOTS of food and if after two months if there is minimal to no weight gain we will be starting her on meds for inflammatory bowel disease. We really did not want to jump into these meds as this is not always easy on small children and basically she will take them for the rest of her life. We will try these meds for two months – that is, if we get this far in the plan- and if she is not responding well we may have to come home on a more permanent basis. Good news is - we did have a positive weight gain this week !!– which I am so grateful for since this is really my whole life right now. The trick will be seeing weight gain over the next few weeks as she has just gone off of the antibiotics. Hannah seems to have a pattern of eating well while she is on antibiotics and then taking a dive in weight after she finishes. This pattern is consistent with inflammatory bowel disease. We will be doing a stool sample over the next couple of weeks to make sure she is not getting re-infected with anything and then we will also get an MRI done in Cusco, if she has a clean stool sample. We are now washing/rinsing every dish in clean water, and bathing the kids in clean water too. Other families do not have to do this, but we will do what needs to be done. That being said my kids do not get bathed that often because it is quite the chore to heat up water and fill a tub. We also have to be extra careful with ALWAYS washing our hands and at this point- Hannah is having minimal contact with the outside world. We need to make sure she stays healthy to get accurate results – living in a 2nd world country makes this incredibly difficult. I mean how many families can say they have a favorite antibiotic? – We can because we are constantly sick here. I never imagined how sick we would be and how often we would be sick – just thinking of it makes me SICK J - NO, but seriously I am sick right now – but with a chest cold – which for us is actually abnormal here.
What does inflammatory bowel disease mean for Hannah? Well, if she indeed has this it will be hard to tell whether she has ulcerative colitis or crohn’s disease for a while. We will have to see as things develop but one of the most common risks for someone with these diagnosis’ at such a young age is that she will lose her colon/ and or have a much higher risk for cancer. Not exactly the news you want to hear about your two year old. It is hard to imagine my playful little girl with a colostomy bag. I pray this is not what our future looks like, but we are taking things day by day. We are still not sure what is going on. We are frustrated we do not have answers but we also know that no one can give us those answers right now. Even the doctors told us it just takes time and that at this point it is fine to continue to work on things from Peru.
We had really hoped to come back with answers, but we do not have them unfortunately. This month has been exhausting physically and emotionally. We are so humbled by all of the help from everyone during this difficult time for us. We are so sorry we had to come home right in the middle of everyone’s super busy schedule and we appreciate everyone’s flexibility while we were home. I also just want to say a special thanks to my Dad for making our hospital stays much more comfy – we are so grateful.
We feel so blessed to have had such a wonderful team of doctors working with us over this last month. I am overcome with gratefulness that we could return to the States and get such excellent care for Hannah. The medical system in the States is incredible. Truly it is. I cannot help but thinking of so many little kids John sees in his office who have a terrible prognosis and nothing can be done for them because the medical systems here. The world we live in here is so different from our world back home.
Please pray for us as we embark on our two months of trying to get Hannah to eat. Pray that God gives me patience for this difficult task and pray that God gives us wisdom to figure out what is going on. If she only had a bacterium all this time we are so grateful but if this is not the case we would like to figure out what is truly going on.
I think your prayers are what kept us going the last month – so please, do not stop. We feel so blessed to have such a wonderful team of supporters always lifting our family up in prayer. We love you guys!