Welcome back, ya'll! Where have you been? (just kidding)
I am sorry that it has been so long since our last update. We have much to tell you!
First off, I would like to thank those of you who come to visit Ethan on a regular basis. We are so blessed that Ethan has friends who care for him as much as all of you do! We thank you for that!
Also, Tia did make it out of the hospital finally. It took four extra days of recovery, and she is doing somewhat well with a little pain every now and then...but otherwise she is doing great!
Ethan, however, I feel is not doing all that great. He is still in high spirits and still smiles and now giggles at us whenever we are in the room. But his overall condition has not improved.
This past month we have been through two endoscopies taking biopsies at each one. The first one was just to see if there were any abnormalities in with his digestive system. The second was to send off to a lab to be tested for two conditions called Tufting Enteropathy, and Microvillus Inclusion Disease. Both of those came back negative. We have also taken blood samples to be sent off for testing to see if the level of his Lymphocytes has gone back to normal. LOL...ok, let me explain why I am laughing. We really don't know what all that means; however, there was a huge screw up anyway. They sent these time sensitive blood samples via FedEx to wherever the lab is, however, FedEx lost the samples somewhere in Memphis. They can see where the package was scanned in, but are unable to find it at this point. The problem is that this sample is considered a very large sample (20cc / a little less than a 1.5 tablespoons). For an infant, that is a considerable amount, and now they have to do it again on Monday.
We have also been through 4 more different types of g-tubes, all of which leak profusely around the insertion site. Leakage consists of formula, mucus, bile, and blood. Blood? Yes, blood? His platelet count has been so low that when he sneezes blood POORS out of his nose. When he bears down to try and pass gas, or other rectal things, he forces large quantities of blood out from around his g-tube site. Over the past two or three days, he has been really good about not leaking anything. His platelet count is starting to come back up, but the wierd thing is that it just spontaneously started to do that. Doctors cannot explain why his platelets are always all over the board, so just one more mystery to add to the mix.
We now have a geneticist working with the group trying to test for Shwachman-Diamond Syndrome. If this comes back positive, it could lead to an answer as to why he is not digesting his foods like he should be. The other test she is doing is for Pearson's Syndrome (read the second paragraph, Ethan has the "exocrine pancreatic insufficiency"). The basic idea is that we don't want him to have either one of these. Death is usually the case in both of these when it comes to infants. The other half of this coin is that we are not currenly able to preform these test due to the fact that insurance currently will not cover these tests. We can pay out-of-pocket, but the cheaper of the two can range up to $800. We just don't have the money available right now to pay for that.
So three weeks ago, we started Pedialyte again. We stayed on that for approx. a week, then we began adding sugar. After another few days, we began adding amino acids. All the while, he was handling all the changes very well. As a sidebar, we would like to add that mom and I were giving him breastmilk from the bottle behind the doctors backs. It was extremely small amounts, just enough to taste. And yes, in the end we did tell both the doctors what we were doing. They both had the same response..."Awesome! Now STOP!" And they both giggled.
We also tried another pork enzyme run to see if he could even handle the amount of pork in the enzymes considering the fact he has a severe pork allergy. That did not go so well. He poured blood out of his bottom for two days. We quickly put an end to that...again!
Ok, now we are up to this previous monday (1/26). We started him on what Tia and I like to call the magic formula. It is called Tolerex. We call it the "magic formula" because if he can handle this formula, he will be able to come home in a reasonably short amount of time...like one/two weeks. He will still have to come home on the I.V. for his lipids (fat). This coming Monday, we are doing another two-day enzyme trial. After which we are switching to a formula called Vivonex. With this formula, we will be able to get off the lipids and pull the I.V., but he will still need the enzymes (the pork or the vegetable [vegetable enzymes are also an out-of-pocket expense]). But changing his formula could possibly mean that he will not be able to come home in one/two weeks; however, the doctors are still hopeful. Please keep in mind that we have been told he was coming home in two weeks since he has been born...6 months ago.
We have added two more doctors to the mix. The first one is an ENT (we don't know his/her name). We have asked for the ENT because any time you touch the inside of his nose (we have to suction boogers out of his nose ALL THE TIME as a result of his Cystic Fibrosis) he begins to bleed down the back of his throat and he choaks on it. So we have asked them to cotterize the inside of his nose, or whatever is causing all the bleeding. Before they will cotterize, we have to try three different approcahes. This is just standard procedure. We have already tried saline, and now we are trying some eucalyptus smelling drops being dropped in his nose. We don't know what the third step will be.
The second doctor is for his Kidney's. For some reason, Ethan is dumping a whole lot of protien into his urine. But the truth is, we really don't know why the Kidney doctor is around. They don't really tell us much of anything in that regard.
The past two days he has been in very high spirits. He smiles more and more often, we have been able to get him to giggle out loud for the first time in his life, and he was able to leave the unit for the first time ever with family to go on a stroller ride with his big brother. I will tell you what...they were both LOVING IT!
We are working more and more with physical therapy to get him on his tummy more, and to help him to pracitce rolling over. We also work on sitting up, his upper body stability, and head/neck control. He sees the feeding therapist twice a day as he has a serious oral aversion. He works with speech therapy to learn Spanish, German, and Latin, oh and can't forget sign language...just kidding! But he does work with speech therapy so that he can learn that it is ok to have a bottle in his mouth and he won't "freak out" as much. The fear is that when something starts trickling down his throat, he doesn't know what to do with it. We can thank Deaconess for this, and screwing up the progress we had made in the first place.
Disclaimer: We currenlty have two of Ethan's Deaconess nurses that recieve this email, Nurse M and Nurse W. We do not blame these two for the oral aversion...but we do blame other certian members of the nursing staff over there. Nurse M, and Nurse W...we love you guys...remember the Junior Mints!
So this should bring you up-to-date. I am sorry it takes me so long to write...school is KICKING MY BUTT!!! We thank you all for your continued prayer and support. And even though it takes me so long to write, we will continue to keep you up-to-date.
Take care to you all, and God Bless!
- Kip, Tia, Riley, and Baby E -
p.s. If you wish to be removed from this update please feel free to let me know. There will be absolutely no hard feelings.