After we were discharged on August 3, the discharge orders stated that we would get a blood draw at least once a week, every Thursday to be run STAT. Well we got Norah’s levels checked on August 6 and found out that she was on the borderline of too low… again. We were relieved to find out that they didn’t order us straight to the ER but that we needed a redraw to check levels on Monday. Much to our pleasant surprise, Norah’s sodium level went up 1 point so that she was out of the danger zone for low sodium, so they just wanted to keep a close eye on it, which means we were free to make our trip out to LA for a follow-up with the transplant team.

We left on Tuesday so we could be settled in before our appointments on Wednesday. I convinced the head doctor for the living donor transplant team to meet with us prior to our appointment with the gastroenterologist. We realized we had met him before, but were able to sit and talk with him and ask our questions. We learned a lot more that we were confused or unclear about as far as our ability to allow Norah to receive a living donor transplant instead of only being eligible for a deceased donor. While she still isn’t as big as what they want children to be ideally before transplant, the doctor said something that gave me hope oddly enough, so I’ll paraphrase but basically he said, “We say 10 kg as kind of that magic number that we look for to do living donor transplants, but because Norah is having difficulty gaining weight, we will take what we can get so long as she is healthy enough to withstand a living donor transplant.” He also mentioned that while she is in no way the epitome of health, she is relatively healthy given her diagnosis and difficulty with sodium and growth. He said that he would entertain the idea of living donors for her transplant sooner than we expected, and that there were a handful of people who called in to their team interested in donating and being tested as potential donors. Because of medical privacy laws he couldn’t tell us much more, but Jason and I both felt a renewed sense of hope after that conversation! We are so thankful that some of our friends and family would volunteer for such a selfless act to help save our daughter!!!

Then at our appointment for Norah with her gastroenterologist, we had a very good conversation as well! We talked with the nurse coordinator first, then the gastroenterologist, and then the surgeon joined briefly. Jason and I both remarked afterward how nice and knowledgeable everyone is, and we feel like we are in good hands! We talked about medication adjustments, replacing the medication that Norah hates and fights the most (as in she is intentionally trying and sometimes succeeding in throwing up almost every day during and after I give her the antibiotic), decreasing the number of medications she is currently taking, and that perhaps to ensure that Norah’s sodium stays within a more healthy range, that maybe we need to switch her lipids to a TPN, but only at night so that she could still nurse during the day. That made me happy, because that is something that I have feared is that she would have to stop eating orally or would have to stop breastfeeding. The doctor said that really it should be called PPN for what we are using it for since TPN stands for “total perienteral nutrition” which according to a google search states that, “TPN may include a combination of sugar and carbohydrates (for energy), proteins (for muscle strength), lipids (fat), electrolytes, and trace elements” but we will only be getting “partial perienteral nutrition.”

Regardless of our appointments at UCLA, we have to wait to make any changes so that the UCLA team can speak with the Las Vegas team and make sure everyone is on the same page regarding her medical management so that they make the best possible decisions for her at this time and moving forward.

The other thing that was encouraging was that they actually recommended that we have Norah multiple listed on more than 1 region’s transplant list, which is something our insurance is hesitant to do for us. They provided us with very sound reasons we should pursue multiple listing and offered to help in any way that they can. Again, we feel very fortunate to be with the UCLA team, and even grateful that they are so supportive of any way we can get Norah better faster! Thank God! What a great feeling to have after leaving a doctor’s appointment!!

After Norah got the Broviac placed, we were finally discharged the next day (July 21). We got started with our home health on Wednesday, had to have a dressing change late Friday night (I’ll get to that in a bit), and then a blood draw Tuesday the 28th. When I hadn’t heard from the doctor’s office about lab results Wednesday, I felt a little uneasy. Usually when you don’t hear about blood work it means no news is good news! Right? Wrong. I finally called the doctor’s office Thursday morning and they still hadn’t gotten the results from home health, so they had to request them again.  Low and behold, Thursday afternoon at about 3:30 I got a call that Norah’s sodium was lower than it’s ever been but because the results were from 2 days ago, they wanted a redraw. Well anyone in the medical world knows that you can’t get blood work results back before the end of the business day if you do a blood draw after about 2, even if it’s marked STAT. So there we were, on the other side of town for one of my doctor’s appointments, faced with the inability of a redraw unless we went to the ER. You probably know where this is going…

Sure enough we were admitted to Sunrise again after Norah’s sodium was only 122 (normal range is 134-145). Luckily we met with Dr. Baron’s associate, Dr. Elizabeth Mileti. She was awesome! We really liked her and she was totally on the same page as us as far as decreasing the lasiks and other diuretic as well as starting Norah on lipids to help her gain weight now that we had a Broviac catheter. After a couple of days we were within the range they wanted us for sodium (still not typical, but at least high 120s) and we were cleared to go home on Monday. Unfortunately the doctor that took over on Monday (since Mileti was only there for the weekend) didn’t put the orders in quickly enough and they threatened to have us stay another night until they could figure out the lipids for use at home with home health. To make a long story short, I sincerely cried to the coordinator for our home health equipment agency and said that I just wanted to be home. I told her we had spent more of July in the hospital than out and that Norah wasn’t “getting better.” I told her that Norah didn’t eat very well and was very stressed when we were in the hospital and so I cherished every day that we got to be home and would fight for any opportunity to do so that I could. Not sure whether my tears or the coordinator made things happen, but we were able to go home late Monday evening. Thank God! I cried more tears of happiness!

Ok… backtracking just a tad, we were set up with 1 home health nurse initially on July 22, when he came out that Friday to do the dressing change, let’s just say that he did not follow proper sterile procedure in doing the dressing change. Since we had read and been demonstrated to by the nursing staff in the hospital, I knew that his technique could put Norah in jeopardy of getting infection so I kept questioning him, asking if he could do this or that, and he totally blew me off. Not to mention he sort of made fun of me when he came out initially because I was up in arms about having someone here to do the flush when the doctor’s office kept calling to make sure it would be done by such a time and he was taking his time getting to our home. Anyway… I was not impressed by this particular nurse to say the least, and so we were reassigned to a different nurse. The nurse that came out after we were discharged the last time was so great! I was impressed by her patience, her understanding, her care, and her way with Norah. The nurses that did the next blood draws were great too! I guess there’s always a bad egg in every batch! Just thankful that the original nurse we were assigned will never step foot in my house or touch my daughter ever again. Even Stella didn’t act like she trusted him… and you know how intuitive dogs are about humans. So at the end of the day, we came home, stayed home, and were set to do flushes at least every 24 hours and provide Norah a lipids supplement 4 nights a week to help her gain weight. Success!!