Holy cow I didn't realize it had been so long since I had updated. It's been just one huge blur, which seems to be the story of my life lately.
Eli has been home from the hospital for a week now. We pushed and he was able to come home because we have such a medical setup here and he has nursing. He did decent after getting home, although he struggled alot with his blood sugar.
We met with Eli's new medically complex doctor 48hrs after he was discharged. They ended up needin to change all of his feeds and his fluids. His blood sugars are dropping quickly while he's off feeds, and he is still running dehydrated. So he is now on more calories and carbs, and his water has been increased. He also is not getting as much time off the pump. He gets 2 hrs in the morning and he's done decent with maintaining his blood sugar. He also gets 2 1/2 hrs at night and he is doing horrible keeping his sugars up. He has yet to actually get that whole time off the pump. We have had to put his emergency sugars plan into effect every night. We are also still seeing many signs of being a bit "dry" and are working to combat that.
He has had some wheezing issues again as well and had to go back to his complex doc. He made a bit better management plan and has also decided that we are going to ultimately need to provide Eli more support to help him conserve energy and properly handle clearing secretions so they don't settle into his lungs. He has decided to increase Eli's rescue nebulizer treatments, as well as his CPT and he has also placed an order for Eli to have a Cough Assist machine. Hopefully if we can help Eli cough and clear everything a bit better on his own, we can provide a bit of extra protection for his lungs.
Eli is still struggling with not being on O2. We had a day or 2 where he did well, and then right back to it. We are seeing his O2 sats drop and his heartrate and resps shoot right back up the moment he takes his O2 off.
We have also learned this week that Eli's endocrinologist is no longer able to manage Eli's care when it comes to his hypoglycemia. He believes it is related to the Mito and is unsure what needs to be done to help stabilize it all. He is referring Eli back to his geneticist/Mito doctor to deal with all of it.
Eli also had another nurse quit this week. Eli was yet again to complicated. We are unsure of how to prevent this from occurring so frequently. We are 110% upfront and honest with the nurses when they interview. We go over every drop of his medical care. They are again looking for a new nurse to help cover 40hrs a week. We are changing around some of the requirements, and hoping that helps weed out some of the problems a bit earlier on in the process.
Eli meets with his geneticist tomorrow. They were able to get him a rush appt. He will meet with his eye doctor and his neurologist next week as well. We are working to get back to a new "baseline" and to figure out where we go from here.
With each illness we are learning new things about Eli, and learning of new problems. We have definitely learned that Eli's lungs are by far his weakest point, and for Eli they seem to be the hardest thing to heal. Each illness is placing a stronger and stronger hold on his lungs and we are struggling to get back to stable, let alone baseline.
We have already informed Eli's new complex doctor that in a few weeks we would like to have a very serious sit down talk and discuss where we are, where we go from here, what we start, what we stop, what we change. We feel so many times that Eli's doctors all tip-toe around alot of subjects that we all know are right there needing discussed. We are hoping that his new primary doctor will be able to openly honestly handle these types of discussions.
Where the rest of us are...
Bob and I are exhausted. Currently Eli only has 36 if his 84 hrs a week covered. This means that Bob and I are 100% in charge of his care 132 hrs a week. It's exhausting and Eli is continuing to be more and more work each day. We are constantly reassessing and making changes. It's a games of numbers and we are always re-figuring and just trying to keep up.
Emily ~ She's busy as always with school. She is involved in her 2nd book club of the year, still in choir and strings and student counsel as well. To top it all off she has decided to audition for the school talent show and is working on picking the perfect song! She's hitting the age where she is becoming boy crazed and that's always fun for Bob and I to hear all about!
Jace ~ He's doing pretty well with school. He made some advancements on his last report card as well on his IEP speech goals. Some things are still proving to be quite the challenge. Assessments are coming up and this will be the first time that his IEP accommodation will be in place. We are really hoping that will help Jace out and allow him to feel more comfortable witht he testing. He's still enjoying school and making new friends. He won an award this month with this school and we were all super excited about that!
Benjamin ~ He's doing decent in school. Like always still struggling on many things. He has moved into the class clown role as he's learned that he can make his classmates laugh and he enjoys that interaction. That combined with his constant moving and spinning and pacing has gotten him in trouble multiple times lately. He's still getting all of his IEP accommodation and is making VERY slow progress towards reaching his goals. At home he still stays super busy on his kindle fire or the nintendo or Wii.
Ariana ~ She's turning into such a stubborn little lady. She's girly as could be but beyond rough and tough. Just last week she used Emily's razor to "practice" shaving like Emily and Bob. She shaved all of the skin right off her chin. Then 2 days later she got a huge splinter in the palm of her hand. She makes it thru all of these events with virtually no tears and her hair perfectly in pig tails or braids. It's interesting to watch. She is loving school and doing well. She has learned almost all of her ABC's and now knows her numbers up to 13! She knows all of her shapes and colors!
I think that sums us all up for now. I will get on tomorrow after the geneticist and update. By that point I should hopefully have some more detailed information on where we go for here.
We are frequently asked for specific things that people can send thoughts or prayers for...
1. For Eli. He is my little fighter and I'm constantly amazed by his strength. That being said his lungs are really slowing him down. He's struggling with keeping up with what he wants to do and it's really interfering with his desire to play. He ends up needing to take frequent breaks and have others help him do some of the things he would normally on his own. He so badly wants to be a normal 2 yr old and play and his lungs are making that impossible.
2. For Eli's doctors and nurses. We are losing so many people to the complexities of our little man. We need a strong team that is as strong a fighter as our little man. We need them to be able to make good decisions that balance Eli body AND Eli's quality of life. We also need them to communicate with us openly and honestly and clearly.
3. For us. Bob and I struggle each day to just get thru it. We are lonely, so lonely. We feel isolated and honestly very depressed quite often. It is such a struggle caring for a little one like Eli. It is literally taking EVERYTHING that we have. It is also tough for the oldest 4. They understand only pieces of it, and it can be scary for them. They do such an amazing job staying strong for our little man and they shower him with so much love it's overwhelming to watch. Their connection with him is intense.
4. Lastly and VERY importantly we ask for thoughts and prayers for all of the other families out there. I know that you are here reading our journey BUT please never forget that there are families on similar journeys. There are other little warriors out there fighting thru each and every day. There are other exhausted parents out there fighting for what is best for their kiddos, fighting to make it thru each day. Please please please never forget that there is a whole community of us, a whole community fighting thru each and every day, leaning on each other, sticking together as one big unconventional family held together by this horrible disease of Mito.