The Weekend & Week Ahead

Well judging from all the emails and comments about the video it seemed everyone really enjoyed the show Elias put on. Wasn’t it great? It is amazing the way he does things and with such enthusiasm. The jungle jumper has become a new favorite getting into it several times a day and having and absolute blast each time. We were bursting with happiness Saturday when we first put him in and saw how excited he was. We love seeing that boy smile and get excited, he deserves that.  We also got some potential good news today about nursing. There is a small chance that we will have some night nursing soon. Hopefully, it will come to be and will work out as it should without any hitches. We are not going to get excited yet until it actually happens and is settled for certain.

We continue to have issues with that darn mucus fistula and despite the negative culture for C-diff and other infections we are not comfortable with what is going on. Unfortunately, as you know no one wants to work with it. It is really making him uncomfortable, making his skin breakdown, very red much like g-tube breakdown we were accustom to. I just wish we could get some sort of answer with this.

Tomorrow Elias will be getting another Immune globulin (intravenous) (IGIV) infusion. This will be the first home infusion and he will likely be continuing this every two weeks through the winter season. He handled the first two infusions in the hospital just fine, but to play it safe they are doing it slow again since it is the first time in the home. It will take four hours to infuse. We also have an ENT appointment (airway) and urology this week. Early next week we will have our IFSP evaluation meeting to restart the home therapies along with finally getting into the new local pediatrician and seeing pulmonology. So the next couple of weeks are really shaping out to be quite busy.

On a final note, yesterday Elias’ trach tube somehow came out. The trach ties holding it on is Velcro and somehow came undone and the tube just fell out.  Katharine and I were sitting about 10 feet from him looking at some catalogs online when I heard a buzzing sound, much like a cell phone vibrating. When Katharine walked over to the play pen where Elias was playing she saw him smiling at her on one side and the trach tube was clear on the other side. Once Katharine announced the finding as she picked him up out of the play pen I had jumped up and grabbed the emergency trach tube. Thankfully it went in without issue and Elias was back to playing within minutes. It is only the second time in the 17 months that has happened, thank God! It is one of those moments where you just sort of stay calm and do what you were trained to do when it happens, but after the fact you sort of lose it and the adrenaline really starts going. We can really do without the extra drama Elias! :-) We are not 100% sure how or why it happened, but it reminded us why he has to have someone awake and alert with him ALL the time. We were just glad there was not anything more to it than there was and no other interventions were needed. Hope everyone has a safe and happy week!