Well he is finally out! What was supposed to only be 70 minutes turned into 3.5 hours!!!!!
GI said things looked okay but his stomach was raw and she still suspects EoE in addition to FPIES. We will have to hold off on any new food trials as he may be reacting to something we are currently considering safe. We will have to wait for the results of the biopsies to find out if he has EoE and to see if we can determine why his labs are out of wack and he is so anemic.
Dentistry was considered a HUGE success. His malformed tooth was able to be saved. It was built up and capped to protect the area that came in without enamel.
Ben is not very comfy but we hope to be going home soon.
Well here we go again. I must admit this is not something I ever feel prepared for. This time has really sucked. Ben had to stop all solids and go on clear liquids only for 24 hours. Upper and lower GI scopes and depending on how bad his malformed tooth actually is either a repair or removal.
I am sure in theory that sounds okay. With Ben's FPIES he cannot have ANY meat or we have a vomit to shock reaction. So no Chicken broth. No Jello (or anything else containing gelatin). So we were pretty limited in what we could give him. Water seemed to be the only thing he would take any of. He also had to stop his medications before surgery this time. That did not go well.
About an hour after arriving at the IWK his reflux was acting up and he was feeling pretty sick. He ended up throwing up twice before surgery.
We have met with anesthesia, GI and dentistry and we are all ready to go...I think...
So Ben decided he is not going to eat or drink anything. He is back on his IV and sadly the doctors are trying to find a balance of pain meds that will give the poor kid some relief. He is due to start some steroids tonight to help with the swelling so that should help some too.
On the plus side the DVD player in our room works and Despicable Me seems to be offering the best distraction so far.
So today was surgery day. We stayed last night at Ronald MacDonald house to make things easier. Somehow this didn't make us feel any more prepared. Surgery days are harder now, not that they were ever easy. Ben now understands that something is up on these days even if he doesn't really understand what is going to happen.
He was such a brave boy and walked himself back to surgery with his giraffe named Bear and his doll named Baby.
The recovery room was a nightmare this time. Ben was angry and in pain and screamed for all he was worth. We spent much of an hour passing him back and forth between Ashley and myself and in the end he settled when Harry came in to watch cartoons with him.
We are settle up in 771 and hopefully Ben will continue to eat and drink so we can get out of here. So far so good, fingers crossed it continues!
It really and truly has been one of "those" weeks. To be fair it has been more than a week but my patients and sanity have been tested none the less.
It all started with Victoria coming home with a NASTY cold. It lasted for about a week, but her throat was so sore she could hardly swallow. Harry was the next to get sick. He was worse than his sister with a high fever and refusing to eat or drink. After the cold seemed to start letting up the poor kid ended up with chicken pox! He (and I ) were miserable! He would bring me the tube of anti itch cream and say "mama fix it." Oh how I wish I could have.
Once Harry was well on the mend, Ben ended up with the cold. PRS and a cold is never a good mix. Even though Ben has had his jaw corrected he still gets pretty sick with any normal childhood thing. His cold and fever held on for days. He refused to eat, he wouldn't drink and even getting his medications in him were a challenge. He was having trouble breathing and went back to sleeping on his front for a few days.
As I am sure you are all aware Ben has struggled with his weight gain. We hit another plateau in the summer and really struggled to snap him out of it. Finally between August and the first of November he was back where he needed to be. This illness however had his weight drop back below what it was in the end of August. I am so frustrated! Despite syringe feeds and to ups with water and Pedialyte he struggles. I feel like I should be doing more but have no idea what.
He was miserable for days, the Saturday things went from bad to worse. He awoke screaming. He started holding his ear and we were off to the ER. Unfortunately it was too late, his ear drum had perforated. This is common in cleft and PRS kids due to the inability for fluid build up to drain. The doctor assured me that there was nothing more I could have done, but I still feel like dirt over it. The doctor told us that depending on where the perforation was it is most likely a good thing as it will make him more comfortable and give the antibiotics a chance to work. The bad news is he could not see the perforation. This means more follow up with Dr. Hong at the IWK, and keeping our fingers crossed it won't affect his long term hearing. Again frustrated.
Things are looking up and we are almost a week into the antibiotic. He still isn't himself but is doing better at least.
Today was our marathon clinic day with Ben at the IWK. Overall the doctors are very pleased with how well Benjamin has been doing as of late.
Plastics/Cleft Palate team was our first stop. Ben has gained weight and grown well. The surgeon is happy to proceed with his palate closure. The wide u shaped cleft has narrowed and they feel that now is the time to act. Dr. Bezhuly is arranging a preadmission visit and scheduling the surgery for right away. The way he is talking I am thinking between now and by the end of January at the latest.
ENT was next. Dr. Hong was please with his ears. Both ears were free of fluid and no signs of infection. All of Ben's hearing screens have come back excellent and he has only had a few infections. Over all Dr. Hong thinks we will be able to avoid having tubes placed. As long as Ben's next hearing screen is clear, and we can avoid infections we should be okay. The plan is still to have a really good look in his ears when he is under anesthetic for his palate repair and decide then. Regardless he will clean out Ben's ears on the day of surgery. Fingers crossed.
Today we met Ben's pediatric dentist. It really wasn't anything more than an introduction and how the dentistry/orthodontic service will be involved with Ben in the years to come. His (2) teeth are fine, which we figured they would be. We were prepared about the issues with a cleft palate and teeth. Then with the complications of the jaw distraction surgery and his teeth. There will be involvement from a pediatric orthodontist prior to his third birthday. All issues will be seen to right away. Again the talk was around surgeries that will be coming up over the next decades until he reaches adulthood. In the end he will have the best set of teeth around I'd bet!
It was hard to be back in the hospital for that long. I have made it a point to make sure I am in and out when I go by myself. Today where Ash and I were there together and we had Harrison it really brought the past year. It has brought the reality of being back in the hospital with Ben again...and reliving it all over again. The fact we are going into Christmas doesn't help and just brings EVERYTHING back!
...we are still waiting to see what the final word on the PICC line is.
The radiologist was able to see it (FINALLY) BUT it isn't down all the way where they would like it. This may or may not be a problem, as Ben only needs it for antibiotics and not chemo nor TPN.
The doctors are supposed to make up their minds this afternoon so that the PICC can be tried.
The plan is IF we can use the PICC line as placed now to start the paperwork to get us HOME!!
I will be doing almost all the care myself however we will have to get private nursing care as well, and that may take a little bit of arranging.
There is no definite plan but things are starting to move in the home direction. Even though we are going home...the next 6-8 weeks are going to be really hard I think.
Today was a waste. Well not entirely but most of it was.
We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.
It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!
The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.
Once we eventually saw ID/Immunology and they asked the same questions I have already answered 1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!
Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;
Labs to be repeated to follow inflammatory markers, as well as his WBC and CBC results. Urine to be sent as well for testing.
The bone scan, MRI and possible other 2 day test (that has yet to be named)
Consult with Cardiology (apparently the inflammatory markers with the WBC levels can indicated heart issues) more than likely tomorrow as it is late now
Consult with nephrology to make sure nothing is up with his kidneys ( a common problem with Pierre Robin babies)
Consult with genetics, again
Consult pain services to asses pain control
Consult nutrition services (although not sure why as his weight is great)
So to sum up. I know NOTHING more than this morning. To be honest if anything the longer we are here the more questions that are brought up. Hopefully this mystery will be over soon.
Yesterday was a bit exhausting. Most of it was spent waiting, although it wasn't really clear what we were waiting for.
Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.
I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.
The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.
Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.
The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.
For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.
I will hopefully have more to update later on. Fingers crossed all goes well.
I honestly thought we'd go home today. While Ben is still very uncomfortable, and had a very LONG night... his fever is down. He has had numerous X rays and other tests. I figured we would go home to wait and see rather than wait here. That however is not the plan.
While no one is coming right out and saying what is going on, I'm thinking osteomyleitis. Or rather I am thinking that is what the doctors are thinking it is what it is. Both ENT and Plastics have been in today. More blood cultures were sent. It also looks like Ben will be having a bone scan, ultrasound and another MRI. Kind of sounds like that is what they are thinking.
Right now we are busy "waiting and seeing".....so for now we are staying...*sigh*
I think the best thing to do is start from the beginning. Ben and I arrived at the IWK early yesterday morning, 0645 to be exact. I had packed up and left Ronald McDonald house. We had to walk to the IWK as the spring/summer street cleaning schedule was in affect and I had to park the van in the IWK parkade. We threw our bags in the van and then reported to the Day Surgery area.
Things started out alright. We were admitted. Paperwork filled out. Forms and consents signed. I changed Ben into his hospital gown and we started to wait for the plethora of surgeons, interns, residents, med students, nurses and support staff to begin their parade. Ben had the remaining of his preop blood work and tests done. Dr Hong and Dr Bezuly along with the anesthesia guys came in and gave their speech. The OR was booked for 3 hours and felt it would probably be over with before that. The nurse came to take Ben away. He was crying and that made me cry to be honest. It was so hard... but they had to take him in to give him some pain relief and minor sedation prior to securing his IVs. The liaison nurse told me she would be out to give me a report as soon as they had Ben's airway and surgery was going to start. As promised she returned 30 minutes later and told me that the IVs were no problem at all. First attempt for both the one in his hand and the one in his foot. Good news. Ben is still a tricky intubation just because of his Pierre Robin anatomy. It is improved from before and the anaesthesiologist were able to secure his airway on the second attempt. Apparently he was given some oxygen and all looked well. Surgery was starting. They would remove the left, allow the plastics team to close the left then begin work on the right. All sounded fine to me. The nurse said she would report back in an hour and that would give me a chance to get coffee, breakfast, make phone calls or whatever it was that I needed to do. I made some phone calls, sent some texts and tried to update the blog. I did manage to grab on of Tim Horton's finest coffee and make my way back to the family waiting room. I sat down and waited....expecting to be told they were finishing up and that I would be able to see Ben soon. However that wasn't quite how it ended up.
The nurse reassured me Ben was tolerating the operation very well and all of his vitals were excellent. However the surgeons had encountered a complication. The left distractor was embedded in the jaw bone and the device was not as easy to remove as they had anticipated. While the whole OR should be over, the surgeons were still only on the left side and no where near being done! The next update would be in 45 minutes. I went to call Ashley and let him know the plan. By the time I finished I sent a few texts and made it back to the waiting room. The nurse was a bit later that she planned on being, in fact she didn't return for over an hour! I thought I would go insane!
Eventually she came out to say that the device had been removed and that the plastics team had started their work. I knew the plastics part was going to be pretty intense this time. Dr. Bezuly had a really good game plan and Ben would be a new little man. I was so relieved to hear that they were nearly half done. Still I was going insane since it was almost 1330!!!! The right side was an easier removal and by 1445 Ben had made his way into recovery. I have never been so relieved in my life!
Dr.Bezuly came out to meet me followed by Dr.Hong. Turns out the left side had a massive infection!! (Big surprise eh??? I've only been saying that for HOW long????? And dismissed for being overly cautious!!!) So in addition to being embedded in the bone, the distractor device had some puss on it. Lovely. There were some issues with the bone but nothing major and nothing that (at this point) will need additional intervention. Now for the cause. Apparently because Ben was so small there were very limited places for the distractor device to attach. One of the screws on the left distractor was too close the the fracture site. Because of this it was not anchored well and started to loosen and work it's way out! So this answers why the infection never totally cleared and why the poor little boy was in so much pain and crying ALL the time. It hurt!! The doctors have decided to stop the cephalexin and begin clyndamycin. By IV first then switch over to oral. The right side looked excellent and healed beautifully. The positive thing is Ben laid down loads of good bone tissue and the integrity didn't seem to be impacted by the infection. This spared us from bone grafts, metal plates and overall unpleasantness's in that regard!
I was assured he would be awake soon and that I would be able to see him. Over two hours later he was just starting to stir!!! They eventually allowed me in despite him failing to wake up. He opened one eye when he heard my voice, smiled, sighed, closed his eye and resumed sleeping. Just like a Floyd boy!
We ended up back in good ol' 761 around 2200. Our second home...what are the odds right? To be honest I think that made things worse. I had gotten so used to being in that room with OUR things in it. Pictures from Victoria and Harrison. Toys for all the kids from child life. Our suitcases and things from home. This time it was just empty and sad. Plus being so close to the elevator I could hear every time it arrived on the floor. I was so used to going to the door to check if Ashley and Harry were coming to visit. I did this more than a few times before realizing they weren't going to be there no matter how many times I checked and it made me even sadder.
Over the course of the night Ben went from being sedated to being inconsolable and back to being sedated. He didn't have a great night, and neither did I. I am so tired I could just cry.
At 0730 one of the ENT residents announced that Ben was being discharged on antibiotics and I could go whenever I was packed up. I was livid. He wasn't eating, not controlled pain wise and had not been monitored for the 24-48 hours they stated after coming out of surgery as discussed in the preop. Nor was he back to eating normally or had they tried him on the oral antibiotics as they had told me they would in the preop. I felt very deceived and I knew they wouldn't be doing it if Ashley were here.
I called right then and there and got an appointment with our pediatrician in the valley, since they were offering no plan to manage Ben's pain nor the fact he wasn't eating.
I packed and left. I didn't want to be there if they weren't going to do anything for him. The drive took over two hours. I had to stop several times to calm him down, or clean him up as he was still feeling rather sick. I also decided to pick up his antibiotic on the way to save a trip to town later. I had to try 5 pharmacies before I found one that stocked the oral suspension!
We were seen by Dr. Hilliard. She was waiting for us actually. As always she was very concerned. She wrote some scripts for pain control. She also decided to place Ben on a probiotic supplement since he has been on antibiotics for nearly 10 weeks already!
Together we discussed a plan for Ben's feeding. He is still trialed on a bottle. If he will not take it I will syringe feed him until feeds go back to normal. I picked up the supplies when I filled the pain medication prescriptions. I need to get at least 20mL in Ben every hour to meet his fluid needs. Obviously this could be in a bigger feed or spaced into individual ones. Dr. Hilliard is on call all weekend starting tomorrow so I can go to VRH to see her if need be. I will see her back in the office Tuesday regardless. Should Ben's weight go down we will go back to fortified feeds, or discuss NG-pump feedings (since I have been trained and have all the supplies). I feel better that there is a plan now.
Ben is medicated and sleeping now. The antibiotics make him feel sick and he hates them. Even his Ranitodine doesn't seem to do much to help with the reflux at the moment. I have been keeping the Tylenol and Advil going around the clock to try to keep the pain in check and have the stronger drugs if need be. (Fingers crossed we won't need much or for long)
Hopefully we will all have a good night and get some sleep. We ALL need it!
The surgeons have moved on to Ben's right side. Hopefully will be a bit easier than the left. They hope to finish within the hour or so. Fingers crossed!!!
Our liaison nurse just came to update us. Ben is doing well so far. There has been a complication. Apparently they are still working on the left side. The distractor device has become imbedded in the bone making the removal more challenging.
For now that's all I know...next update in 30 to 40 minutes
The final count down is on. In less than 12 hours Ben will be back in the operating theater for the second part of his mandibular distraction surgery.
It will be a relief to get rid of that external hardware, and the internal hardware too for that matter. However at the same time I am dreading it.
This time I am on my own. I don't have anyway to wait with. No one to distract me to keep me from watching the second hand on the clock as it seems to be stuck in the same spot.
While I know these doctors are experienced and more than capable at what they do, there is always the fear of the unknown. Any time someone has an operation there is risk, even if it is small. But lets face it...so far odds haven't meant much to us.
This is a bit earlier than what Dr. Hong had wanted to remove the device. He said the optimum time frame for the bone to ossify is 10+ weeks. We are only at 9 weeks. With all of his infections and pain, I can't help but worry what they may find when they get in there and what that will mean for Ben's course of treatment. Also there is the worry of post op infections again. Ben has been on antibiotics 8 of the 10 weeks post op already with only a few days break here and there. Every time the antibiotics were stopped the infection came back full force. It has been a nightmare and I hope this surgery will be the end of it! I worry about his breathing, I mean Pierre Robin babies are noted for breathing issues galore!! That with anesthesia can be a recipe for disaster. Nothing went wrong last time and his breathing was horrible so really the odds are not for anything happening, still given our track record I'd be a fool to dismiss it.
Then there is the feeding issues. Babies with Pierre Robin often have ongoing feeding issues. I have noticed even with just the infection that Ben doesn't take what he should at a given feed and I have to pretty much sit with him all day forcing him to eat, what he can, whenever he can. Luckily doing this until the infection started to become in control again allowed him to continue gaining weight and avoid another NG tube and pump feedings. I HOPE that his pain control is better this time and that he won't be so sleepy for so long. That his feeds can go back to normal and within a few days be home...or at least to my parents place.
I really should try to sleep but I am not sure I am going to be able to. Our room in Ronald McDonald House is in the basement, and I believe we are right below the toy area, given the thumping and banging, and other bizarre noises coming from above. Since Ben is asleep in his car seat I may take him in the bathroom with me so I can have a shower, since I believe for the first time since I arrived hours ago, the bathroom is free. The house isn't the same without our friends here. I miss Jeff and Cherlyn. This place just isn't they same without them. There was warm food waiting, and loads of friendly people, yet I wanted the comfort of a couple familiar faces and good friends.
I will try to update as much as I can tomorrow. Hopefully as things happen, since I am alone and need to keep my mind occupied so I don't end up admitted to the psychiatric ward.
T-11.5 hours....and Ben will be in the OR...Here we go again.
Welcome to Holland. Yup that's right Holland. Today's post is a rant or vent if you will on exactly what my husband and I have been going through. We were planning on Italy and got Holland.
Confused??? Yes?? I thought so. Let me explain.
There is a fantastic poem that sums up life with a special needs child. The metaphor in the poem is what I am referring to. The poem is written by Emily Perl Kingsley. She is a writer for Sesame Street and her own son Jason was featured on the show many times.
Emily wrote the fantastic poem "Welcome to Holland" to try and allow others to understand what it was like to have a child with special needs, in her case Downs syndrome. She writes the poem to give a very strong metaphor about preparing for a trip to Italy (having a baby) and getting off the plane unknown to her in Holland ( having a baby with special needs). I would encourage you all to read the poem. Go to Google and type in Welcome to Holland or you can watch the video of it being read below that I found on YouTube:
This is the closest thing I have found to explain how overwhelming the December night was for us. Everything went from the highest of high to the lowest of lows.
I will never forget the sound of the air being shut off at Valley Regional so that the LifeFlight Helicopter could land. To continue with the metaphor of Emily's poem, when we arrived at the IWK hospital it felt like Ashley and I had been thrown from a plane somewhere in the middle of Holland with no map and limited Dutch speaking skills. What Dutch we had only made us worry and that much more afraid.
The journey has been very overwhelming thus far. It is something you can't comprehend totally unless you have been through. There is a quiet unspoken language between parents in the NICU/PICU. It's an understanding. The quiet smile and nod as you sit there by your little one, things beeping, flashing or respiring. It is the simple understanding of someone who knows how you hurt, how you want things to be okay, how you want to do something but there isn't anything you can do.
Holland for us was uncharted territory. Pierre Robin wasn't something we were familiar with. We didn't know anything about it. The more we found out, the more afraid we were. Then there was anger and some days there still is. I won't deny it. I was angry. I am angry. Why? Well for numerous reasons really.
First there was the finality of everything.The phrases that started "Your baby will never..." or "Like a normal baby" infuriated me and still do. It was like these medical professionals had a magic ball and decided to tell me our future. In a number of cases they were wrong. As a parent you feel like saying "See what do you know?" but you realized that wouldn't do any good. Yes, the medical profession does this so we as parents don't hold out false hope. So we don't hang onto a dream that will never be realized. Still my husband and I kept trying on many fronts and won.
Next was how impersonal everything was. It was always cold and clinical. I hated being anywhere near when rounds were going on. I hated how they turned Ben from a baby into a case...not even a patient really. It was always "This is the Pierre Robin baby, baby male Floyd (eventually Benjamin Floyd)...born blah blah blah. I hated it. I know clinically that is how it is done. As a parent, however, it isn't easy. When we were admitted in January I think it was worse. I know the clinically correct term for the reason for admission was failure to thrive, this doesn't make it easier to hear as a parent. Especially every morning for 30+ days. There are only so many times you can hear the team come in and say "This is the Pierre Robin baby, Benjamin Floyd, 6 weeks, readmitted for failure to thrive"....blah blah blah without feeling like you are the failure. That somehow there is more you could have done, something you should have done, or thought of that you didn't that would have prevented the admission and problem. Even though deep down you know there wasn't anything more to be done.
Finally the very few who have decided to be nonsupporting in our unplanned trip into Holland make me frustrated and a bit angry. They meet us with attitudes that somehow imply that this is our "mess" to get out of.
I'm sorry but there wasn't a form to fill in that included a box as to if we wanted a child with special needs or not. Would I change Ben?? NO NOT FOR ANYONE OR ANYTHING, to me he is perfect.
Being thrown into the middle of this kind of a situation takes a very large toll emotionally, physically, financially and psychologically. To be honest and blunt about the situation, the only way to cope is to accept help and in some cases ask for it when needed.
Help comes in many forms from picking up the phone and calling/texting, helping arrange care for the other kids, making a meal or helping cover financial costs among many other things. In some cases support has come from family and in other cases complete strangers. By accepting this help we are doing NOTHING wrong.
Please do not feel we are looking for handouts and please try and find out the whole story before passing judgement on us. We are NOT out for someone else to pay our tab or deal with the unpleasantness so we don't have to. We want understanding and support.
To answer the questions I have had about the pay pal donate button on the right (namely why is it there), it is there because we have had offers from friends to help us cover the costs of Ben's care in the city. This gave them a way to help without us giving our financial information out. It was an offer and we accepted. That is it.
Now I am sure this has raised the question of "Isn't health care free in Canada?" well yes...to a point. What people don't seem to remember is that Ben is the patient. While I roomed in with him, I was NOT a patient. While this seems obvious and trivial it makes how you view the situation totally different. Ben was able to stay for free in the hospital. I was allowed to stay with him. Ashley, however, was not able to since he had Harrison with him. This means that in order for Ashley to be close by to emotionally support Ben and I during all the procedures he needs to PAY to stay somewhere. Then there is that matter of meals. Ben was able to get breast milk or formula. That was the patient meal. This means for Ashley, Harrison and I we needed to pay for all of our meals. Three a day for 30+ days. That is a LARGE chunk of change. Then there is the fact we had to buy a van to get Ben's car bed in. The gas for a van isn't cheep either, especially driving 100+ Km each way to and from the IWK. With the van came the registration and insurance and all of those little extras. Lets not forget parking fees too. Plus there was Christmas. Then there were Ben's medications and medical supplies he was discharged on/with. They cost money too. Even though I have a drug plan we were still left paying a hefty bill. Then there are the follow up appointments. Driving back and forth means more wear and tear on the van (repair bills like the brake line), fuel cost, parking and meals. As you can guess things add up quickly. This is without taking into consideration the airfare for Ashley, the fact he was here on unpaid leave for a long time and lets not forget the "Chevy Aveo" Chronicles that preceded this whole mess. Oh and we have the "normal" bills for not one but two households. I am sorry but this is why when someone OFFERS to help us financially I don't turn them down. I certainly do not expect ANYONE to help pay for these things, and I am not asking ANYONE to do so but when the offer is made to us (no matter how large/small) and I accept this does NOT make me a bad person. It will not make me "stronger in the end" to turn the help down and find another way.
I would also like to point out that I am now here on my own without my main emotional, physical and psychological support, since Ashley had to return to the UK and go back to work. Holland is NOT an easy place. It is lovely but it can still be overwhelming.
Now for the UP part of the post. I want to thank a few of the people who have been our supporters.The ones who have followed us into Holland and are there with us to stay no matter what. THANK YOU. To my parents, our other children (Victoria and Harrison), my grandmother, several of my aunts and my uncles as well as my great Aunts and Uncles, Emelie ( my cousin or rather my sister since she is the closest I will ever have to a sister) her husband Jonny and son Parker, many many more of my cousins, my friend Laurie and his mom Lucy, my husbands friend John, our church family, the entire Gaspereau Elementary School Family, my father in law, all my sister in laws and brother in law, my nieces and nephews, as well as our friends who follow us on Facebook and the blog ( Sara, Carolyn, Louise and Bill, Marcia, Erdeena/George, Marjory, Barb and Dave, Andy, Guy, Mark and Pam, Judy, Connie, Tiffany, Margaret, Andrea, Ashley, Pat, Sherry, Melissa, Marlee, Charlyn and too many more to name) THANK YOU!!!! You have all given us so much support in every possible way. We would not be surviving in Holland without you. The little things mean so much.
We are adjusting to life in Holland. Even though it is different, I think we are going to like it here.
This has been a bad day. End of story. Where do I even begin...
Last night Ben became inconsolable. It happened out of the blue...he just couldn't settle. I have noticed that his pin site has been getting progressively more red. However no doctor seemed to be too bothered by it. I got the "It looks fine" and "It's normal for there to be redness when there is external hardware" that kind of crap. Yesterday the discharge continued but was mixed with blood. I cleaned the sites with sterile water and that helped a bit I think. However last night I noticed a lump. A very small but definite lump by his right external pin. Over the morning it got bigger. It was warm. By noon you could see a faint yellow collection beneath the skin. I managed to talk the pediatricians office into seeing us. Problem was it was at the same time as Victoria's dentist appointment.
I made arrangements to drop Mom off at the dentist with Victoria and Harrison. I hadn't had my Iphone on me but when I got back to it I had a message that my husbands step mom had passed away. While she had been sick quite a while and we knew it was coming, it was still hard to hear.
I dropped Mom, Harrison, and Victoria at the dentist. I carried on to the pediatricians office. Honestly I was there less than 10 minutes. She did not like the look of it. She called the local hospital. She did NOT like what they said so she made arrangements for Ben to be seen by the IWK.
I doubled back and picked everyone else up from the dentist. I noticed what looked like a river running from the back of the van. Since it was fairly warm today and we had so much snow the last couple days I didn't give it much thought....BIG MISTAKE.
Victoria made out well at the dentist. No cavities and she doesn't need to be seen again for a year!! (The only YAY moment of the day!!)
I took the crew back to my parents and headed into the city. I hit Halifax just before rush hour...not fun...especially in a HUGE van from the late 90's.
Poor Ben was beside himself by the time we got there. He was in so much pain and had a mild temperature. He was screaming blue murder.
Over the next 5 hours we saw 4 ENTs (residents and the on call guy), 4 Plastic surgeons (again residents and the on call guy), The ER doctor, loads of nurses, someone from pain services, a radiologist and a lab tech since the nurses were having trouble getting blood work done on Ben. Ben also had to have a mild sedative so one of the surgeons could drain the collection next to his pin. After that Ben was taken for a CT. Then the waiting began.
To cut a long story very short the decision was made we could go home BUT Ben would be given two high dose of IV antibiotics, IV pain medications and some Tylenol for his fever. I was given a script for more oral antibiotics to be started overnight as well as prescription strength pain killers. Also I was to bring him back if he hadn't improved in the next two days. Like wise if he gets worse I am to go straight back in. Should he stop eating well or develops diarrhea from the medication he needs to go back for admission. We are to be reassessed by his surgeons on Monday. We will make a game plan then. Hopefully we can avoid readmission and more surgery. Should all go well we will be seen again in the clinic the end of the week.
When we finally were allowed to leave with our high dose antibiotics on hand, I paid my 9 bucks to get out of the parking garage and noticed a large pool around the van. I wrongfully ignored it. Turns out the brake line my husband had fixed has completely gone again. Wonderful. Something else to be fixed.
To top it off the weather driving home was horrid. Snow, rain, freezing rain and ice pellets depending on where you were from Halifax to here.
The boys are both asleep now and so is Victoria. We are staying at my parents for tonight in case I need to get Ben seen again through the night. I physically, emotionally and psychologically hurt. I think I will get some tea and head to bed. Hopefully some sleep will help me get over this horrid day.
