Today was quit an eventful day! When a child is seen by
multiple specialties at Children’s they try to cluster all you appointments
together so you are not making five trips in five days, well today we had five
appointments in one day and a lab for blood work up! We had our first appointment
at 1130 and left at 630, someone was maybe a little too overly ambitious about
our clustering. Jude was a definite
trouper though he had maybe a grand total of 30 minute cat naps but was happy
and content up until the last bit of his last appointment.Different people have asked what’s next for Jude and in some ways the doctors and Chris and I ask that question too but I will try telling what I know for now. I think the best way is to write based on areas versus trying to clump things together.
Cardiology: PDA they did a scan of his heart right before he left the NICU and everything looked stable, the open valve had not shut nor opened anymore. We were very nervous about going home with it open because different people had talked about it getting smaller and then “blowing” back open and him being symptomatic, the last thing I wanted to add to my plate was issues with Jude’s heart. After speaking with the cardiologist he explained that the valve never gets bigger it only gets smaller and that the difference in the sizes is how the tech took pictures of the heart, it falls within the margin of error. He also explained that Jude’s opening is small enough that he would slowly show signs of problems before anything major happened and that they would be able to catch it and has Jude gets bigger the valve will actually become less and less likely to have any effect. Where was he to explain that months ago?! So we will see them in about 4 months, 6 months after he left the NICU and then that case should be closed!
Orthopedics: Jude broke his pinkie when he was staying in the NICU. This baffled everyone and actually I was told that had we come from home with his pinkie broken like this CPS would have been called, not what a Social Worker wants to here by the way. Well after much fuss trying to get ortho to actually look and figure out what was going on they saw that it was fractured, right near the growth plate. A while later after a next x-ray they thought that there might be a growth. His pinkie was too small for them to get a good look at things so last week we went back in for a follow up. From that x-ray they confirmed that is was a facture and they are pretty sure it has not affected the growth plate and has looked to heal itself. Chris and I are to monitor that the pinkie doesn’t grow differently but there should be no need for follow up. They are still baffled though how a baby could break their pinkie the way he did. But for now we will say that case is pretty much closed.
Hematology: Jude was on Lovanox shots daily after two clots were found in his brain back in January. He received the shots for 3months twice a day and at the first of May they did an MRI and showed that all the clots had seemed clear enough (they don’t always go away completely). That have to do blood work between a month and two months later to make sure all of his levels are stable. Because of the amount of blood they need and how small he is they took some blood today and will take the rest in two weeks. After that we should know if everything is good and prayfully that case shall be closed! UPDATE: Jude had his last blood work up which included four nurses to get his blood and me almost passing out! However they said they would call if any problems, no calls! YAY for Jude!
Neurology: They began to follow Jude after he had the two grade 4 IVH (brain bleeds) back in January. After they seemed to stable themselves out they decided nothing surgically needed to be done. When Jude went back in May for the MRI the doctor noted that his ventricles in the back seemed very enlarged. Neuro was consulted again, Jude has always had enlarged ventricles (he’s got a big head too!) at the time they decided to do a follow up. Today we went for another ultrasound; Jude’s ventricles have become even more enlarged. Normally where ever someone starts on the growth chart that seems to be that path they follow and they start to follow the curve, for Jude’s ventricles that is not the case they seem to just keep going up and not stabling out. This is why they have decided Jude needs to have a shunt put in. They do not feel it is an emergency but they do think it needs to be done soon, June 25 to be exact. When placing a shunt Jude cannot have any other infections or issues especially in his abdominal area. Not to jump a head too much but Jude’s Gtube site is still not healed and this is why they have to wait. When putting in a shunt in the back of the head they go in through the stomach, makes total sense right? I have yet to research why they do this but that is what they do. They also have to bypass Jude’s trach which can be tricky. The other nuero was his IVH. When someone has IVH, especially grade 4s, there are different milestone test up until age 6 they do to see if there will be any long term affects such as CP or development delays. At each vent clinic appointment they check to see how he is developing if there seems to be any major concerns they will look further into it otherwise I believe is first test will be around his first birthday? UPDATE: Jude had is shunt placed. He went in on Monday and was discharged on Wednesday. What I learned The shunt is placed on the top of his head towards the right, the pick the right because the majority of people tend to be right handed (Jude 90% time uses his left) and your right hand is controlled by your left side of your brain so if there is any damage it is better not to affect the dominate side. The shunt ( I tried to find a picture online still haven’t found one) is shaped like a push pin with a long pointed part that goes into the brain, the top part is about the size of the button on a baseball cap. From the top part is another tube that come of the side it goes along side of the head down behind the ear through the neck and down into the abdomen. The tube is very long a coils in Jude’ stomach (it would coil some in mine too) this allows Jude to grow without having to worry about length. The fluid is then essentially able to be distrusted and peed out. They are not sure what caused his hydrocephalus they believe it was caused by his tumor but it may have been caused by IVH. They are also not sure if he will need the shunt his whole life or if at some point he will have it removed. They said sometimes the shunt stops working but the body kicks in and you never even know. It’s about a 40% that in the first year Jude will have to have some kind of revision done. They only repair, replace, remove when a person becomes symptomatic. They when healed Jude will not have any restrictions accept for he can’t play football (can’t say this mama is too bummed about that). Jude is recovering well; he is still having a hard time sitting up because the fluid change and at times gets fussy probably a headache but he is great spirits and smiling a lot. Not where I would be!
Plastics: Right before Jude left home from the NICU they requested he have CT done of his jaw to see how well the brace worked. That day the doctor from plastics was at Jude’s bedside eargerly wanting to show how well the brace worked. He stated that it was better than he had hoped for. Jude continues to keep his mouth closed more and more each day. His lips are also starting to tighten back together. We will not need to see plastics for a few months when they will follow up on the growth of his jaw. They will perform the other needed surgeries next year which I will go into more farther down this blog. Plastics did state that Jude will need “a lot A LOT” of dental work done when he is in his late teens (poor guy).
Therapies: Occupational, physical, & speech. When they measure where Jude is at they always go by his corrected age, i.e. his due date. Because Jude was 2 months premature right now even though he is 5 months old they consider him 3 months old. When they evaluate him they would start at the 5 month marker then work their way back till the 3 month marker, he is not considered behind until he falls below the 3 month marker. By the time Jude is 2 the expect him to be caught up to his actual birthdate. Hopefully that all made sense. Jude was receiving both OT & PT in the NICU. For PT he had been working with range of motion, tummy time, holding his head up, as well as development of milestones. With OT he had been working the muscles in his mouth; he had no chin muscle and extremely tightened cheek muscles from the mass. Jude also must learn how to suck, swallow, and breath all at the same time. Thankfully he loves his binkie and that is a huge help in teach that. He also receives 5mls of milk a day through a bottle with a special nipple. This helps him learn those three things but also helps give him oral stimulation so that he does not get an oral aversion. At the hospital he was receiving these services 2 to 3 times a week at home he will be receiving these once a week and they will be combined focusing on just a few key things. In the next few weeks through the vent clinic we will start more OT, PT, & speech. The main focus right now will be starting him on oral stimulation Because Jude has the trach and vent there are something’s he will be behind on for instance rolling over tends to be delayed in trach/vent patients because it is hard for them. This does not mean they will not catch up and be a “normal” child at some point it just means it will take longer to learn. He will also begin speech; they will work with him and us to learn sign language because again with trach babies they cannot speak. When he is bigger they will help him learn how to “talk” around the trach. We are still not sure how the damage done from the mass will affect his speech and if he will be able to fully speak. For now we take his cuff down twice a day, this is for other reasons but it does allow him to make noises around it. It’s so great to watch him find his voice!
ENT: This was a another specialty we recently met with. ENT was the group that placed Jude’s trach on the day he was born (therefore they make the call when he needs a bigger trach), they were the amazingly talented team who removed his tumor (w/ the help of plastics) and they will be the team that does his surgeries to reconstruct what the mass had damaged. This is where a lot of the unknowns lie, not because the team is unqualified but because Jude’s mass was not common and therefore the damage is not always the easiest to know how or what will need to be fixed. Here is what damaged we know was done; Jude has no soft pallet, his hard pallet fused together incorrectly overlapping itself, his upper jaw was formed point titling up in the front instead of even, his bottom jaw was small and grew with no angle (this has mostly been corrected from the brace), his tongue curved in towards the left, his gum line on the bottom is very small and his gum line on top is very large, he has no uvula (the hangy ball in the back of your mouth), his naval cavities are shaped more like funnels because the mass pushed up the bone, his ear canals are small and come in more straight not slanting down, this what they know now(I think I remembered everything). Two reasons they are waiting to do the surgeries till he is older is first he will be stronger and healthier so each surgery will be less risky. The second reason is that the body knows what it is suppose to do and where it is suppose to be. They want to see what corrects itself and what could adapt to (no one knows why we have a uvula so why give him one?). When we met with the ENT they told us that it looks like part of the skin for a soft pallet is already forming (it will not form completely by itself), she also noted how well it looks like his mouth is taking shape. His upper jaw is starting to come down, when he starts to get teeth the teeth should pull down the jaw more. Jude has a middle case of hearing loss from small ear canals and fluid on in his ears. They think this is caused from the mass but also when people have trachs it prevents fluid from properly flowing down. He will be getting tubes put in his ears roughly six months from now. They were not sure how his speech would be because of his anatomy, they noted that when they removed the tumor is voice box was very small but they did not know if that was from prematurity and still being so small or the mass had affected it. They were glad to hear him making noises when they saw him, although we still don’t know how he will do with putting sounds together to make purposeful sounds. He will need a lot of dental work in his teenage years. They also follow up for the first bit to make sure the tumor does not grow back. We will revisit them in about four months for a follow up.
Gtube: I don’t know what category this fits in so it gets its own. Jude had his feeding tube (GT, GTube, mic-key button) that was placed in March. He also had a fundo (not very fun) done, this is where they rap his esophagus around so that he cannot have anything reflux. They do this when they person is not able to protect their airway. It allows things to go down but nothing to come up, as he gets bigger he should be able to burp possibly throw up but it will be hard. Sense Jude has had his GTube placed the site has been extremely irritated looking, although I don’t think it seems to bother him as much anymore it is not good for that area. Jude has very sensitive skin (thanks to me) and so it has been very hard to help that area heal and we have tried many different treatments, currently we are trying a moisturizer cream, a powder, and air J. Unfortunately this may just be battle till it is removed. Jude will have the GTube till his trach is removed; this allows Jude to always get the nutrition he needs if he cannot get it all orally. Jude’s stomach was extremely extremely small when he first got the gtube so his stomach had to be vented as he was feeding; this was something they had not done before so it was definitely processes to figure out the best way. Let me see if I can explain this (picture attached) There is a pump that runs the formula through at whatever rate we set, the tubing from that is placed into another tubing that is placed into his gtube. The top of the gtube tube has to ports one for the food and a second one for the syringe. The syringe does not have the plunger part in it. We use a rubber rope to hang the top of the syringe from so that it is elevated. This allows the tube to also be stretched and elevated. The food can then drip down into his stomach but the air can be released up through the syringe when needed as well if it is too much for his stomach it allows the syringe to be able to build up w the fluid and then go down as he can handle it. We’ve learned to put a mesh gauze on top of the syringe because whenever he would cough or burp it would launch the food (stomach contents) up and out making a nice mess. When he is feeding it makes it very difficult to move him around without spilling it or pulling at his stomach. When Jude first came home he was on a continual drip of 22hrs a day! I hated hated hated this! I felt like it prevented him from doing so many things, honestly the venting of his stomach stinks and I can’t wait till he no longer needs it! With that said we have started compressing his feeds till he gets to a bolus feed. Right now he feeds for one hour and is off for two. During the night he is still on a continual feed. We normally feed him for one hour, let him vent for 30minutes after and then remove the feeding tube. The end goal is no venting needed 30 minutes bolus feeds every three hours with no feeds during the night, like a typical baby. This will probably be about September when we reach this goal. As he gets bigger and he can handle solid foods they feeding tube will be needed less and less. The doctors are still not sure how he will handle swallowing foods and if he will be able to protect his airway when things go down, this is part of his anatomy they have not looked at yet.
Trach & Vent: Finally, this and his GTube are the main focuses right now for Jude. This is also the question we seem to get most often how long he will need all that. I have to say that is a great question and I wish I knew! The trach Jude will have till he is about 2 ½. They want him to keep the trach for his surgeries because it is safer airway. They do not remove a trach in the fall or winter because of being more susceptible to illness so he will probably have his trach removed the a year after having the surgeries. Originally he was not supposed to go home on the vent but because of multiple things; aspirated pneumonia, prematurity, being on the oscillator, simply being on the vent for so long his body is not yet able to handle not having the vent. Jude has been on the same settings for his vent sense march, there have been different hiccups along the way that have kept him on the same settings. They wanted him to be stable when he went home so they didn’t change much, then he had to adjust to being home, then the vent clinic doctors needed to get to know him, then he got sick, then it was his shunt placement. Let me first say that I totally and completely trust the doctors’ wisdom but this has been disheartening at times. It’s hard not to look back and think 3 months have been wasted but we are where we are and in Jude’s whole lifetime this is just a blip in time… Hopefully his next visit on the 13th we will begin to wean off the vent some! To wean of the vent they will lower Jude’s support settings on the vent, he will also trail off the vent i.e. be off the vent for 15min on the vent for 2 hours. They feel that Jude will be able to quickly wean off his vent. I am not sure what quickly means and really a lot of it is up to how Jude does but it could just be a couple months. What this also means and what has been very hard for me to process is Jude’s ability to travel. Jude cannot travel while on the vent, he also cannot travel during the flu season (trach patients get sickness non trach patients cant). If you’ve already done the math you realize we are taking Jude nowhere in the next year L this also means that come flu season Jude will be in somewhat of a lock down and visitors will be limited. Currently Jude does not travel much of anywhere but I will talk about that in a different post. …
So I think that is it, actually I am sure I have forgotten
something but this is a long post and I am sure you are done reading, if you
have actually read it all! Let me say that CMH is great about trying to explain
things and keep us informed however I feel like I understand maybe an 1/8 of
what is actually said. So don’t hold me to anything I have just written because
as we know I am not a doctor and Jude certainly has shown us he does what he
wants. J
-Tracy
