Anderson's Medical Expenses
�He went through multiple increases in his constipation meds - taking senna, miralax and colace together. He received an enema - and still didn't produce a bowel movement. X-rays showed a "moderate amount of stool", but thankfully no obstruction, so it was just a matter of time.
�I was still uneasy about the strep I was battling so I stayed home while Amy stayed at the hospital and kept me updated. Hospital stays aren't much fun, but hospital stays with a three year old who largely feels fine and needs to poop are a special kind of torture. She deserved a gold star for that alone.�Eventually, the cocktail worked, and on Sunday he was able to come "home" (and so was Amy).
�Monday I was feeling better, but Monday and Tuesday were spent heading into King of Prussia to have labs drawn for his lovenox levels (med that prevents blood clots). He was also able to enjoy crashing a music therapy session that was going on in the lobby. His lovenox levels ultimately were fine.
�Tuesday afternoon, I got sick with a GI bug and was completely incapacitated. At the time, Amy was scheduled to return home on Wednesday morning. I crashed to bed, Amy took care of AJ, and Aaron worked on getting Amy's stay extended.��Amy took over cares for AJ - and not just periodic suctioning and pushing some food in here and there, but she got inducted by fire into all of the details - every med, every shot, every meal, every poopy diaper, every inhaler treatment, every spilled bucket of toys or water beads, every gtube care and even had to work out how to make his food. She was such a life saver that I'll even keep her amusing mishaps during the food making process to myself.��She made it possible for me to rest and recover and was able to keep AJ away from me while I was sick. Not everyone is as lucky as I am to have a friend that would be willing and able to step in like that. I'll avoid being sappy and emotional and just leave it at saying that I'm eternally thankful that she was one of the neighbors that I dropped off cookies to all those years ago.��The weather this week in Pennsylvania was gorgeous. AJ spent a couple of evenings outside on the patio or in the swing. He particularly likes climbing the stairs. Both the outside stairs up to the deck and the inside stairs as well. He's finally getting pretty good at going back down them too.��Continuing on the commentary about having amazing friends -- this week Emily is coming out and bringing Averie with her for spring break. I've missed my girl, and I'm thankful that Emily is able to bring her along. Friday AJ will go back to CHOP again for another scope and from there we will discuss our next steps with Dr Jacobs.��And finally - another trach parent did a great drawing of AJ for us in pencil. I'm looking forward to finding a place to display it once we are home!
Surgery today went well. They were able to remove the stent, and AJ was in and out of the OR so fast that Aaron had ordered an omelette, had to leave to do the post op consult, and went back down to the cafeteria after and they had only just finished boxing his omelette up
Everyone was impressed with how well he was doing. Even going so far as to say how impressed they were. He tolerated the anesthesia like a champ.
Originally they wanted to leave the stent in for longer, however it was eroding into his esophagus, which was the reason for needing to proceed with the surgery and stent removal today instead of next week.
His grafts are in tact and look great so far, but that’s to be expected since there was a stent in place that would have kept any undesired swelling/construction in the tissue from forming over it. I did include a comparison image for reference. You can see the round stent (straw-like) that they removed today in place post op and in the first couple of “current” pictures. You can also see the granulation tissue (white marks) that is in place (they aren’t going to do anything about it at this time as it may go away on its own now that the stent is out). And in the last couple of pictures you can see the grafts in place (marked in pen on one of the pictures even).
He’s doing well enough that we are currently looking at discharge TOMORROW. (Knock on some wood and say a prayer or two please! ).
From here he will need a follow up bronch this coming Thursday and then another bronch with his surgeon on March 8th. Those later bronchoscopies will give us a true picture of how he is healing. It’ll be expected to need to do a balloon dilation or two, but right now we are praying that everything holds in place and heals as it’s supposed to. We will still need to remain local at a minimum until April, but future bronchs will help narrow down the actual timeline.
So for now — we are praying that he heals well and that he still gets to bust out of here tomorrow. He’s definitely restless!!
Thank you all for your prayers. They certainly seem to be working, and we couldn’t be anymore thankful for them if we tried. The love and support is amazing.
Perhaps the reason he has a hard time sleeping is it is too quiet. Hospitals are not know for being quiet, even at the best of times, with all the monitors, nurses checking in, etc. Maybe turn on a radio. Even without the hospital situation it seemed to help my two go to sleep. Martin.
Hey Amber, I'm Tina, and I work for hibu as a Premise Sales Rep in Macon , Ga. I have been following AJ since you subscribed to gofundme. I just wanted you to know that prayers are constant, and I think you are an awesome mother of two adorable children. I cannot possibly imagine how hard this has been for your entire family. Praises for good days, and prayers for bad days.
Amber, I don't know you personally but I work for hibu. I'm a sales rep in North Carolina. Since the day the message went out to all of us about your situation, I sent a financial support but I have also sent prayers and cried tears with you! I think about you often and I read every single update that is posted. I will not stop praying for all of you! Love and prayers! Shondra Grant
We've posted this on our Facebook page (Irish Philadelphia) and we may have some help for them in terms of lodging. In the meantime, they can check this website someone posted. They do lodging for patients in Philadelphia. http://www.hostsforhospitals.org/website/