Last week was unusually busy for us, Jaxson had an appointment every day. Monday, he went back to school after being off for three weeks. He had two weeks off for winter break, and missed the week before break due to his viral illnesses/line infection. After school, we went to the hospital for the ultrasound to see if he has portal hypertension. We were there about an hour, and he did well sitting still for that long. Later that evening after we got home, I noticed the bottom of his broviac was kind of cracked so I called his surgeon to see if we could be seen that afternoon. He was unable to get us in but scheduled an appointment for the following morning to look at it. Because I wasn’t sure if it was cracked all the way through to where it would pose a risk for infection, I took him to the ER just to be safe. Thankfully we were not admitted- which is a rare occurrence for Jaxson, and we were out about an hour later. The ER doctor and two nurses assessed i, flushed it & drew back and determined it wasn’t cracked all the way through and so they put an occlusive dressing over it and we kept our appointment for the following morning. Tuesday, I kept him home from school because the only appointment Dr. Lacey (his surgeon) had was an early morning one. He looked at it and determined that it could be repaired, but since the chest x-ray taken back in December had showed that Jaxson was growing, it was almost coming out of place and it was better to just replace it. We scheduled surgery for that to be next Wednesday (today). Wednesday, we saw Dr. Graham (hematologist). He drew the normal labs to check his blood count, it was 6.7- still low but not dropping drastically. He also reviewed the results from the ultrasound and it didn’t show portal hypertension. A few weeks ago he had decided to wait on the bone marrow biopsy until after the ultrasound to see if maybe that gave us answers. So because it didn’t, I informed him that he would be going in for surgery next Wednesday for the broviac, and maybe that would be a good time to do the bone marrow biopsy as well. He agreed, and also stated it may be good to get a liver biopsy done as well, but he would discuss that with GI when we left. Thursday, Jaxson had school and his home therapy. Friday he had a GI appointment. She too went over the results from the ultrasound done on Monday, and she wasn’t surprised that it didn’t show portal hypertension, because it wouldn’t show up in a child Jaxson’s age and size until years later. I think we were all kind of disappointed, and in a way hoping that ultrasound would give us some answers as to why he’s been anemic. I was hoping this would be easy to diagnose and fix, but almost three months later, I’m realizing that is not the case. She agreed that a liver biopsy is needed, but disagreed with doing an open biopsy during surgery. In that case, they would have to cut him open and take a piece of the liver. She instead said we would do it through interventional radiology, which is less invasive and done by sticking a needle through to his liver. She also suggested getting a colonoscopy & endoscopy done as well. The only time she has done them is when he is actively bleeding, so it would be nice to get in there without a bleed so she can see things more clearly. Saturday we went to the Children’s museum and spent almost 5 hours exploring and playing. We had gone about two years ago, but left after an hour. That time, I remember leaving feeling somewhat sad, because it made me realize just how far behind he is developmentally. By two years old, he should have been walking, and willing to play with different toys and other children. That experience really made me realize and accept that Jaxson was going to do these things when he wanted to. I was so happy to see him enjoy our experience this time, and the fact that he lasted almost 5 hours was incredible.

Today was the broviac surgery. Although broviac placements and removals are quite the norm for Jaxson, and definitely not the worst thing he’s been through, its still scary. Every single time, the surgeon has to remind me of the risks involved and I almost always find him muttering the words “There’s a possibility of puncturing a lung.” Not to mention there are risks associated with anesthesia as well. So i’m usually pretty nervous until I know he’s okay. And because Jaxson is obviously nervous for these procedures, the anesthesiologist gave him versed, a sedative, shortly before taking him back. No matter how many surgeries and procedures Jaxson goes through, Its never easy placing my child in a surgeons arms and watch as they walk through the doors of the operating room. It doesn’t get any easier, it gets harder every. single. time. 

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We arrived at the hospital around 8:30am, checked in and went to the pre-op room. Surgery was scheduled for 10:30, but he wasn’t taken back until a little after 11. Dr. Graham (hematologist) was also present, and under the same anesthetic, was able to do the bone marrow biopsy. He stuck a needle about the width of a fork prong in Jaxson’s lower back. We will find out the results of that by Friday. It’s a fairly quick procedure, about an hour long and he was in recovery around 12:30. I was able to go back with him once he started waking up from anesthesia. He was pretty combative upon waking up, which is to be expected and he absolutely hated the IV in his arm, so that did’t make it any better. The nurse gave him some demerol to help settle him down but ultimately had to take the IV out for him to completely calm down. We noticed some bleeding coming from the new site, and so Dr. Lacey’s PA came in to look at it. She said they expected that to happen because they used some local anesthetic near the site. Just before we were about to be discharged, Jaxson’s temperature went up a little, but came back down a few minutes later. We arrived home around 3 and he has been pretty comfortable ever since. Dr. Graham said the broviac placement is usually more painful than the biopsy, but he hasn’t been in pain & besides the demerol given in recovery, no pain meds have been needed. I anticipated he’d be well enough to go to school tomorrow, but have since decided I’m going to keep him home so i can keep a close eye on the new site.

 

Thank you everyone for your continued thoughts and prayers, and a huge thank you to my mom for always being there when I need her, and even prepping my dinner for tonight.

Jaxsons transplant fund

https://www.youcaring.com/jaxsondahl-681028

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