Monday, November 16, 2009

So Far, So Good

Everybody is gone now- including Brian. My parents left yesterday after Brian, Olivia, and I went to church. Brian went back to work today. He did come home to eat lunch and get Ian up on the stander a few minutes. Tomorrow morning someone from church is coming over to sit with Ian while I run Olivia to school and then hopefully help me get him out of bed. Then another person is coming later in the morning to help me get him in the stander. I can run to the grocery store and pick Olivia up from school while she is here too. The main difficulty is getting Ian moved from place to place while Brian is at work.

His appetite is just about back to normal I think. He just ate a very good lunch, and is content in his cast, which we are very thankful for. He also slept better last night, and neither of us had to sleep with him. The weather is kind of crummy today, but on nice days we can go for a walk. Unless we get really desperate, Ian definitely will not be going on any car rides! Since he can't sit, we have to put on his harness and push and pull him in his lying position across the seat and then strap him in using that harness. It's not easy, and he did not care for it on the way home. I think other than that all is well. I just need to figure out what we're going to do at home for the next 5 weeks!

I think that's it for today. I've been catching up on bills and things that were overlooked while we were in the hospital. I'm anxious to get our cast removal date- the 7th or 14th of December. We'll be counting down the days, and I'll be Christmas shopping on-line! I better go get Ian turned. He's a great little trooper.


I probably won't post too much because there won't be a lot going on. Will let you know if anything changes or we get a cast removal date.

Thursday, November 12, 2009

We're Home!

After visiting with the doctors this morning and having a good night last night we decided to bring Ian home. He has done great but has still not eaten. Luckily, he wasn't skin and bones before the surgery and it didn't hurt him to lose a little. Of course he was getting his nutrition through tube or IV while in the hospital, but we really need him to start eating soon. Maybe tomorrow. We're glad to be home and looking forward to the weekend. My parents will be here until Sunday. Thanks you again for your prayers. We're on to the next phase of the treatment- the five weeks at home in the cast. We don't have our appointment date to get it removed but should be either the 7th or 14th of December. Then we will begin a week or two of therapy. It is our choice. We can do either inpatient or outpatient- our choice.

I've got to get to bed. I haven't stopped since we got home, and I'm exhausted.


Home Today. . . Maybe

Ian had a great day yesterday. No oxygen, and no oxygen during the night. So, it's looking like we will go home today. I had originally wanted two nights without oxygen, but this morning's x-ray looked much much better, and the respiratory therapist said we would know if he was in distress during the night. Him not being able to breathe and us not knowing about it was my biggest concern. The only thing that might keep us from going home today is that he won't eat. They haven't offered any reasons for this except that after surgery it sometimes takes awhile to get your appetite back. It's now been 8 days though, and I think he probably should have it back by now. We'll see soon if they really want him to be eating before he can be discharged. We should have an answer by noon I think. The intensive care doctor is here this morning so we'll see what he says. We'll let you know.


Wednesday, November 11, 2009

No Change

Ian stayed on blow-by oxygen last night but was able to come off this morning. The difficulty at night is that he won't wear the oxygen mask, and he really doesn't have to, but when we prop it up, it falls or he knocks it off. Then the monitor alarm goes off and I have to get up and fix it. This happens several times throughout the night . If we want to make him wear the mask, we have to put arm restraints back on, which we don't want to do. Anyway, he really does fine during the day but just can't keep his levels up at night. He really didn't sleep well at all (so neither did I) and he is crashed right now. I took a little nap myself. He doesn't seem to mind his cast and has been happy. He did great in his stander and ate a few bites of bacon and eggs this morning. We haven't tried his lunch yet since he's asleep. We've been moved to room 115, so instead of being the first door on the right, we're now on the left. Brian is working some from here and is planning to stay the night and go to work when I get here in the morning. If Ian can stay off the oxygen tonight, we'll go home tomorrow. That's the whole hold up. I probably won't update tonight since I don't anticipate any change between now and then. We'll go back to physical therapy (the stander) this afternoon for an hour or more and just hang out the rest of the day. He is also still taking an antibiotic and breathing treatment. The doctor said 30% of his right lung is effected. We haven't heard from my parents so they must be doing fine with Olivia.

'Til tomorrow or something changes- Leah

Tuesday, November 10, 2009

One Last Night?

Ian has had a really good day. He only had to go on oxygen for a very few minutes three times today. He has been fever free and awake since early this morning and spent the majority of the day in his wheelchair or stander. His lungs still appear to be effected, so I'm not sure what that means as far as going home tomorrow. I hope we will be able to, but it's not a definite. Actually, he's on oxygen right now. We're going to get him up on his stander early in the morning and later in the afternoon. If we don't leave here before 11:00, we're going to have to switch rooms. We have continued to be in the intensive care room, but they need it for tomorrow.

Brian's mom and aunt left this morning and my parents arrived around 5:00. They stayed awhile and then took Olivia home to settle in and get ready for bed. It's a little after 9:00 and Brian just left a few minutes ago. Ian is resting peacefully.

I'm getting ready to go to bed myself. We're keeping our fingers crossed for Ian having a good day tomorrow and being able to leave tomorrow evening.


1 Week Today

Yesterday Ian slept until around 1:00 pm or so. We put him in his wheelchair and he continued to sleep, but he woke up some time later and was awake the rest of the day and while he was in his stander. We also gave him a real bath (in a tilted tub) last night which he enjoyed. Unfortunately, it became necessary to put him on oxygen again around 8:00pm or so and he is still on a small amount this morning. He is continuing to drink and take his meds by mouth. However, I don't think they'll take out the feeding tube until the breathing is under control. At one point yesterday, we were talking about going home and what we needed to do to get ready to take him home, but last night before I left I told Brian I better pack a bag for tonight. I don't know that we'll be able to go home today, and I'm not comfortable going unless we are able to obtain a breathing monitor and oxygen to take with us. So. . . that's where we are this morning, and I'll post again when we're able to get off the oxygen or have a new plan.

Thanks again for your prayers, the visits, meals that have been left at the house, and for Colene and Helen and friends who have helped out with Olivia- Leah

Monday, November 9, 2009

Day 7

No news is good news? Ian had a pretty good night last night. At least there were no catastophies. Today he just wants to sleep. He's been on very little pain medicine sice the surgery, so that's not what is causing it. His oxygen looks fine, and we're getting his meds down. He's been in his wheelchair for the last hour and a half but just sleeping. Hopefully when they get him in the stander this afternoon, he'll become more responsive and maybe eat. None of the nurses seem to be concerned, so we just wait. When the doctor did his rounds this morning, he suggested we probbaly need some more time, so it looks like we'll be here another night. Some meds are going down by mouth and some by tube. It just depends on what the medicine is, how it tastes, and whether we think he'll tolerate it by mouth. Anyway, that's it for now. I will let you know when he comes around.


Sunday, November 8, 2009

A Good Day

We definitely have turned the corner! I got here a little before 7:00 this morning. Around 10:00 the doctor came in to reinsert the tube for meds and feeding (through the nose and into the stomach). That was pretty unpleasant to say the least. They put it in and then had to check the placement. They really had a hard time with that because Ian wouldn't open his mouth and bit the doctor. Anyway, after wrestling with him for quite a while they x-rayed, ended up having to pull the tube and reinsert it, and x-ray again. Unfortunately, he had and continues to be in restraints. We hate it, but he just will not keep his hands away from the tube. Anyway, after all that, he got settled, and started to drink some. He still hasn't eaten anything, but he drank a little carton of milk and started on another one. He also drank a little bit of water. They are giving him pediasure for his nutrition until he eats. Hopefully that will come tomorrow. He got his catheter out, so that's great. He's not even on the breathing monitor anymore. I don't know if they'll hook that back up before bed or not. We also got him out of the room on his stander, and then in his wheelchair to walk around a little bit. He did have a little bit of fever this evening but not much, and he smiled and let out a couple of laughs. So, things are definitely looking up, and maybe- just maybe- we'll be able to go home tomorrow night. I feel like we will be able to if he will eat tomorrow.

Olivia went to church this morning with one of her friends, and she and Colene came up here this afternoon and stayed around until 8:00. She enjoys playing in the playrooms and outside on the playground. She also got her own purple nursing gloves, ID bracelet, and syringe. I'm staying the night, and I think Brian is leaving at half-time. We're looking forward to tomorrow and the possibility of going home (if Ian eats). They delivered a stander to the house a couple of days ago, and Brian has the ramp ready when we get there. They'll also give us a return date to get the cast off. We'll definitely be marking the days off!

'Til tomorrow- Leah

A New Day

Yesterday late afternoon until about 8:00 pm was really rough. Medicine was not being distributed through his body because the IV was wasn't going into the vessel properly. His arm and face started swelling, and they had to completely wrap his arm and hand in warm compresses, covered by plastic and tape to keep him from removing it- although eventually he did. Because he wasn't getting his necessary medicine, he was getting more lethargic, eyes dilated, a little fever, etc. Not good at all. Anyway, once the anesthesiologist came in to put in a new IV (since the nurses couldn't get one in) and he started getting his meds, things started to look up. Thankfully, yesterday is over, and we don't have oxygen, IV, or anything going this morning. But since he still isn't eating or drinking, they're going to put a tube back down his stomach to get his meds down and to get some Ensure in. This also means he'll have to be restrained, but at least we'll know he's getting meds and nutrition. We'll have to continue this until he starts eating/taking meds by mouth. Hopefully, that will come later today and we can go home tomorrow. Things have turned around though, and we're making progress.


Saturday, November 7, 2009


This is Brian.

Just a quick update to let you know we may have had a breakthrough late tonight. What started bad may have ended well. Once we finally got his Cortisol into him, he really came alive. As a matter of fact, he was so alive that he somehow fought out of his restraints, ripped out his new IV and then ripped off his oxygen mask; all in about 5 seconds. While the nurses tried to figure out if they could start a new IV, he continued to fight the oxygen mask so I told him if he could breathe without it, I would leave it off. I never thought he would actually do it, but we have had it off and he has been breathing at almost 100% for over an hour!

At this moment he has no IV, no mask, and is sleeping well! We are going to keep the mask off as long as his levels are fine. We are not inserting a new IV unless we have to and will not do that till tomorrow if we do. He got in plenty of fluids and other meds before ripping out the IV so we are in good shape for now and hopefully will have a good and restful night.

Hopefully we have turned the corner. Keep us in your prayers.

Still Here

Ian seems to be a little better today. No fever, and his x-ray from this morning looked better. He was so compacted though that they think part of his breathing problems have been due to that. They gave him an enema yesterday and today, so I think that has given his diaphram some relief so he can take deeper breaths.

The nurses are in the process of a shift change, and we just now noticed that the IV had come loose and his medicine has not been going in at all. Hopefully it hasn't been leaking too long, but they are getting ready to do a new IV in a minute. Also, his arm is swelling because of the IV, so they just packed his arm. Well, at least his x-ray looked better, and he also smiled a couple of times. The nurses could not get the new IV in so they are bringing in an anesthesiologist in a few minutes to insert the new IV. That will be a relief. We are trying to get medicine down orally so I need to help out. We will try to update again later.

Friday, November 6, 2009

Water, Oxygen, and Fritos

It's a little after 9:00, and Brian just left. We've seen a little progress today. The nurse tonight said Ian's lungs sound much better now than when she started her shift at 4:00 or so, and he at some Fritos- his favorite! We would continually hold the oxygen mask close to his mouth, and put it over his mouth in between a chip and a drink. Getting him to eat and drink was quite a relief- even if it was just a little!

It's 10:30, and we just gave several meds and did a breathing treatment, so I'm going to try to sleep until they come back in at midnight. Hopefully, we'll see significant progress tomorrow. They're giving Ian an antibiotic to help kill the bacteria in his lungs, so maybe that will do the trick. We definitely won't be going home tomorrow but I'm sure hoping we can go Sunday. We're doing a lung x-ray in the morning. 'Til then- Leah
Ian's status is about the same. He continues to receive the oxygen and breathing treatments. He did take all of his medicine with water from a straw a little bit ago, so that is a step in the right direction. We may see if I can get him to eat some mac & cheese in a little bit too. That would be great if he would do that. None of this is a huge surprise. We just haven't experienced it before. The doctor mentioned the possibility to us before the surgery. (I think I mentioned this in the previous post.)

Try not to worry. They're taking great care of him, and we are fine. Helen and Colene are not planning to leave tomorrow, so Olivia is in good shape. We have a great nurse tonight and friends ready to help out too.

If anything changes or I get some mac and cheese down, I'll let you know. As always, thank you for your prayers.


Doing Better

Today's x-ray looked better, so that's good. He is considered to have pneumonia though and is still on oxygen. They have taken him off pain medicine through the IV, and when he starts getting agitated, we can give him medicine by mouth. However, he hasn't really been willing to take anything by mouth, so when the time comes, that may be a challenge. He is resting fine, and since he's off the pain medicine, he should become more alert before long, hopefully leading to more willingness to drink, more movement, and cleared up lungs. Just lying here on his back is not the best things for his lungs right now.

They came in and trimmed and padded his cast and this afternoon will do more padding and wrapping. When they put the cast on during surgery, they leave slits in it for a few days to allow for swelling. Then they go in later and fill in the gaps with cotton "stuff" and rewrap it.

Brian has been gone a couple hours to shower, eat, and play with Olivia for a little bit, but he's on his way back now. I just finished eating Ian's lunch- since he's not eating!

Will let you know his progress this evening. We're holding steady- Leah

Some Breathing Issues

Good Morning. Brian stayed last night, and I went home. He thought he was getting the flu Sat but fortunately he got some medicine and it was just a really bad cold. He is just about over it, and now I have it. I plan to stay tonight though.

Ian didn't have a very good night. One of his lungs has been partially collapsed, and he has been receiving oxygen and some breathing treatments all along. Then last night it got worse, and they put him on maximum oxygen-whatever that means. They also will be increasing his breathing treatments today. He ripped out his second IV, so they had to redo that too, and he had a little fever. The fever isn't uncommon, and the lung situation isn't too uncommon either. We haven't dealt with it before though. The doctor hasn't been in yet this morning, so I'll update after that. They're here to do the chest x-ray.


Thursday, November 5, 2009

Day 3

All in all yesterday went great. Brian stayed the night upstairs, and I was able to get good sleep at home. There didn't seem to be any complications except his fever went back up a little. I was back here this morning a little after 7:00, and met Brian in Ian's room. The tube going through his nose to his stomach got coiled, so they had to remove that and reinsert it to get his medicine down, but they just removed it again, and he will hopefully start taking his meds by mouth tonight. They can do some meds by IV too.

They also just got him up on his feet a few minutes ago. PT brought in a stander, and he's upright strapped to a board with an oxygen mask and tubes running every direction. They wanted to get him upright so his lungs could start working better. He'll be in this position for an hour. We're also going to see if he will eat some table food in a few minutes. They're starting to ween him off some of the meds a little at a time. He has been so out of it the whole time, he hasn't been throwing any fits- mostly just sleeping with some moans from time to time.

At 1:00 I've got to go to a meeting at school to determine his homebound situation. I'm also going to go pick up some shorts at Target and drop them off at the house so Colene and Helen can cut them and make him some tear-away shorts to fit over his cast. Because there is a bar going across from ankle to ankle, they'll have to be modified.

Ian has now been taken off ICU status, so Brian or I will be in here at all times . That also means I can stay in his room tonight, and the nurses will only come in to check his vitals. He is in the same room though.

I think that's it for now. Colene and Helen brought Olivia to the hospital yesterday evening, and she played in the atrium area, which also has a huge play surface and some toys. They shopped during the day. She went to school this morning and will probably come up here again tonight for a little while.

Thanks for your continued prayers as Ian recovers and he continues to be more aware of his situation and surroundings.

I've got to get to the school for this meeting.


Wednesday, November 4, 2009

Resting Peacefully

Surgery is over, and all went well.

There wasn't a lot of sleeping going on last night- about 3 hours for me and maybe 6 for Ian, but he wasn't crying and didn't start "asking" for a drink in the middle of the night. He wasn't able to drink/eat anything after midnight, so I lay there praying that he wouldn't want one. He can be quite persistent, to put it mildly. Of course the nurses were in and out several times throughout the night too.

This morning a nurse came in at 5:00, 5:30, and again at 6:00 to give him about 11 different medications. As expected, it was a major fight to get it down but three of us together were able to get him to take the majority of it. Apparently, it was enough because before they wheeled him up he was already in lala land.

Everything went smoothly during surgery, and I was able to sleep a little while we waited. They called us a few times throughout to let us know everything was going okay, and then afterwards the doctor came in to give us more details. He did not lose much blood, so they didn't even have to replace what they had taken out beforehand. They said he just did really well. Soon after that we were able to see him and they took him back to his room.

He is now in ICU with his own nurse in there with him 24 hours, so we are in the parents' lounge. It seems a little odd that we aren't in his room with him, but the nurse is in there monitoring everything, and there is really no reason for us to be in there too. He is sound asleep, although while we were at lunch he yanked out the tube going through his nose to his stomach. They also taped boards to the palms of his hands so he can't pull anything else out. We're just right around the corner from him.

The cast is, as expected, the spica cast. It goes from his toes to about the bottom of his ribcage. The bar goes across at his lower calves. They leave the cast split to allow for swelling for the next couple of days and then will seal that up and wrap over the current cast.

As soon as I finish here, I'm going to go check on him again. We've had lunch and will just hang out here until he starts to wake up. All has gone great so far. We could have had multiple problems but we've been able to avoid most of them.

Thanks for your prayers. We're out of the scarriest/dangerous part, obviously, but his reaction to the pain and the cast could be a major challenge. Will get back this evening and let you know.


Tuesday, November 3, 2009

Day 1 Coming To An End

If you haven't read the previous post, read it and you'll be up to date.

Today has been good- long but good. We started this morning at 6:45, so everyone got to sleep in! Brian's mom and aunt are here, so they got Olivia ready for school while Brian and I finished last minute necessities before taking Ian to the hospital. The morning went smoothly, and we made it on time, no problems. Check in went great, and we soon started making the rounds of consults- primary nurse, social worker, physical therapist, anesthesiologist, resident, x-ray, blood draw, molds for new splints, and finally the surgeon came in around 6:30 or so this evening. Ian did great during all the appointments except rehab and x-ray. By that time, he had pretty much had it, and was needing a break. We got through it though, and he quickly recovered before we moved on to the next thing.

Nanna and Helen brought Olivia up for dinner, and she had had a good day and was enjoying all the attention. She does great with change and just goes with the flow, which is about a necessity in this family! Tomorrow will probably be lots of shopping and maybe a trip to the library.

Back to Ian and his surgery. The overview of the surgery is in the last post. We have a few more details, which involves taking some bone from where they make the cut on his leg and inserting it into the top of the cup. I was under the impression they might be scraping the inside of the cup, but that isn't correct. They insert this bone, kind of reforming the cup and extending it and then stitch some cartilage (or tendons I always get those confused for some reason). They make sure the femur is good and secure in the cup, so that it can't slip out. That's what I understand to be the procedure. One thing we were hoping not to happen that is going to is he is going to have to have the spika cast- body cast. If you aren't familiar with it, it will come to the waist area and got to the tips of his toes on both legs with a bar in between. The other option was less restrictive, but we were not given the choice, which is probably best. Of course we'll manage, and I just don't think about it too much. My reaction when he gets out of surgery tomorrow may come flying out, but we'll deal with that when the time comes. Who knows, with Ian, he may be fine with it. I just don't think about putting myself in his shoes because I don't think I would do so well!

Anyway, the plan for tomorrow is meds will start at 6:00 am, wheel him up at 6:45, and surgery starts at 7:00. It should last about 3 1/2 hours. We will wait in the family room, and they will call us throughout to let us know how he's doing. He will be in intensive care about 24 hours with his own nurse and respiratory therapist in his room at all times. We will be allowed in during the day, but at night Brian (who is at home tonight) will stay upstairs in a guest room. Thursday night I will stay and be able to stay in his room with him. Looks like we'll leave Friday night or Sat morning- depending on how he's doing and how comfortable we are. One of the many great things about Shriners is they aren't in any hurry for you to go home. You can stay as long as you feel like you need to. When we are ready to leave, they will loan us a special harness for the car since of course Ian won't be able to sit. I don't know how it works, but with the cast, he'll be flat, so he'll be stretched across the seat. They will want him to stand at least one hour each day (in a stander) and be up and about (in a reclining wheelchair) as much as possible- which I guess means around the house and going for walks, because I can't imagine going too many places!! If he does as well this time as he did with the ankles, we'll be good in good shape. It is a lot more involved surgery, but we have no reason to think he won't be a trooper again.

It's after 10:00. Ian is sound asleep so I'm going to get ready for bed, and read my book for a little bit. They'll be in at midnight to check vitals and then again at 4:00 am, and then two hours later we'll be rocking and rolling!

Say your prayers, and we'll be back on here tomorrow with an update or two.