Thank goodness his chest is clear (happy dance). On Monday he woke up wheezy and very lethargic. Knowing polygamy was on Thursday (normally) I pushed it up to Wednesday instead. On Tuesday he was very gaggy, lethargic and didn’t look good. I felt terrible as I had to go to work with a tax deadline on Friday. His teacher smsed me while at work and said that he was not well but sleeping. We had given him rehydrate in the morning and sent him with some extra for school knowing feeding him would be impossible.
Jason’s nose is always runny, blocked and has a post nasal drip which goes into the chest. A few days ago he was wheezy and chesty with temps so we started our usual procedure of meds and nebulizing. Dr. P has suggested starting him on singulair sprinkles and demazin to see if that helps keep the post nasal drip under control and avoiding chest infections. He is already on all the nasal sprays that we give him daily so hopefully this will help. But as Dr. P said he has been seeing many kiddies coming in with all sorts of bugs and things and given the fact that Jason is immunodeficient he is doing really well. His lymphocyte levels are still low, his hemoglobin is never right and he needs more fluids so nothing really new. We still need to repeat the cortisol test but that needs to be done when he is healthy and another test he wants to do but that will require an overnight stay also one of the urine tests we did that needs to be repeated but again needs to be done when he is healthy.
As you all know we feed Jason orally during the day with a syringe as he will not eat on his own and a spoon takes hours. Having said that though a couple of months ago he wouldn’t allow ANYTHING near his mouth so I am happy and not complaining at all!! Anyway while in hospital I sat with him, a 100g tub of strawberry yoghurt, a spoon and my cell phone. I made a game of getting him to open his mouth wide and if he opened wide enough he could watch the video I had taken of him eating. Jason normally opens his mouth like a little bird! This obviously has to be fun for him and I did get a bit of progress with the opening with a lot of persuasion and bribery. The tub of yoghurt took 35 minutes with a spoon, lots of giggles and his clothes probably got more than he did. Very time consuming but I am happy to say at least he ate the whole tub with a spoon!!!
Eating wise he will still ONLY eat onion and will ONLY drink water with his sippy cup on his own. Other than that he will eat and drink if we syringe feed him. He is eating orally during the day at least. It may not be on his own or with a spoon but he is eating and it is going down the right hole. Night feeds are still very necessary as he requires the calories and fluids due to him not eating and
drinking enough during the day. We do keep trying non-stop. I try and sneak things with his onion but he knows the difference. I try and give him different drinks and he will have none of it. As it is he is being fed 2 – 3 hourly and has water between feeds.
Gosh this time last year we were preparing for our second attempt of weaning via net coaching at home over the Christmas period and here we are already. If I look back and remember where we were to where we are today a HUGE difference!! Our little man has come in leaps and bounds and he is medication free from all that gagging and vomiting medication that he was on a year ago! Jeepers a year ago already and what a time we had. Our little man could hold out and starve himself for weeks. He is one little boy that will NOT eat if starved. I wonder where he gets his stubbornness from??
I guess one good thing about polygamy, polygamy does give this mommy a “day off”to sit reflect on things, spend the day with my little man and relax a bit.
We arrived at the hospital at 7:30am and only left at 7:15pm. Twelve hours is a long time to be sitting there in hospital. On our way home in the dark we drove through this amazing thunder and lightening storm. Always after polygam during our drive home I smile and pray to God and thank him for everything he does for us and for Jason. Driving through that storm I just felt his presence and I felt so happy knowing that our little man is going to be all right!!!