Broc has been struggling so much with low blood pressures, dehydration , sore throats, chest pain and lots of belly pain. His team have been amazing at helping us navigate things so that he can stay home. Unfortunately due to COVID 19 we are not able to go to Vanderbilt in July for our visit. It will now be pushed till later in the year or even next year. The team is sending out blood kits so that all the labs can be drawn at the home and they will start that process in the meantime.
His Immunologist was concerned about Broc having episodes all the time and how its making him feeling so we contacted the UDN team and spoke to them about letting Broc start his IVIG therapy in the mean time as we are still not sure how long it will be before we get to see them. The labs that they need will not be effected by the IVIG. Broc started IVIG therapy in the home in May.
We prep his sites with numbing cream.
I would draw up all the medication and fill the syringe. We also use some oils to calm him as the stress and anxiety of the needles is not fun for him. He also gets some premeds to counter act the some of the side effects he gets.
The infusion itself last about an hour. I check all his vitals every 15 minutes to make sure he's doing ok during the infusion.
Once we are done we take the needles out and cover with gauze and tape.
These are the bumps that are left behind as all the medicine is absorbed into his skin. Sometimes the bumps are smaller it just depends how the infusion goes and how his body decides to react that day. This way of infusing him is much nicer than being in the hospital all day. He typically chooses a movie and we all snuggle on the couch to watch a movie.We do his infusions once a week.
We have not seen any improvement in his episodes yet but it typically takes 6-8 months before we see any change. One nice thing about being in quarantine is that Broc hasn't had any hospital admits for viruses or flu. We are hoping that his IVIG will give his body the extra support it needs all around. IN the past the IVIG helped with his episodes, it made them easier to handle with not so many admits. It also helped with some of his lab numbers as well as helped manage his Tourettes Syndrome.
This is one of those moments where you just have to capture it. Unfortunately it did make him ill and he paid for it dearly but he so enjoyed it. We have been loving the warmer weather. Broc not so much as its makes it difficult for him to breathe and control his temperature. The cooling towel does help a lot.
When it's just too hot outside there are always card games to play. Broc's favorite at the moment is Go Fish!
We also got some more caterpillars and watched them hatch into beautiful Painted Lady butterflies.
Unfortunately my buddy that was living in the pot plant did not make it but I think we gave it a few extra days in the garden. He eventually lost his whole wing on the one side and was unable to fly.
Broc was in some desperate need of some iron but his team was not comfortable sending him to the hospital for his infusion so they organised it as an in home infusion. It went very smoothly and we hope this will be something that we can continue to do at home. We do miss our nurses dearly but the less we expose Broc to the hospital the better.
Broc did unfortunately have an ER visit for some severe pain that we couldn't control at home. His team felt that he needed to be evaluated. We discovered that Broc had an ilues with a viral infection along with a possible kidney stone. On further evaluation by his Riley urologist they are not sure that it was a stone that was seen so Broc will be going back to the hospital today for an abdominal, kidney and bladder ultrasound to rule out a stone or something else. He has still been in a fair amount of pain on and off. He is also having some pains in his lower rib area on the sides and towards his back. We are hoping to get some answers from all the imaging we are doing today. When we have an update on that I will be sure to post it as I know you all care about Broc as much as we do.
Now onto his legs. His poor legs. As many of you know his legs story started after his Open Heart Surgery in 2010. Since then Broc has had 2 vascular surgeries to give his right leg as much blood flow as it can to grow correctly. Unfortunately all those options have come to an end. His repair is looking great and his right leg has the same amount of blood flow as the left one does. When we went for his follow up last Monday his vascular team did all the tests they could to rule out any other options that could help his legs. Unfortunately his right leg suffered growth when it didn't have the correct blood flow. We were hoping that by doing the surgeries it would catch up. When we went for his appointment in December is leg length discrepancy was 1.2cm. When we measured him last week he has progressed to 1.7cm. He has grown 5mm in 6 months and continues to grow. Once the discrepancy reaches 2cm or more he will start having many back and hip problems. This Thursday we will be seeing an Orthopedic Surgeon at C.S.Mott for them to investigate and look at all the options we have. We have been told of 2 but hoping there maybe more. One is to cut the bones and lengthen the right leg with surgery and the other is to stunt the left leg by doing something to the growth plates. Either way neither of them sound like anything we would want for Broc to go through. We know we need to intervene. We, together with his team will make the best decision we can for Broc. This news has been very difficult for us as parents as we really thought his leg journey was over. Seeing Broc continually endure surgery after surgery no matter what part of his body it is is really difficult for us all. Especially the emotional toll it takes on everyone. The older Broc gets obviously he is more aware of the implications and the limitations he will have. Although we do not know what the treatment will be he has already started asking all the questions. Every year we hope that it will be a surgery free year but it doesn't seem that way.
Please keep us and his teams in your prayers as we try and make the best decisions we can for Broc. With him expected to be 6ft or taller we need to give him the best outcome possible.
We will continue to isolate and quarantine as long as we feel the need. Please respect our decisions.
Thank you for your continued love and support for our family.
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