Day 14 (SDH+13, PAO+8): going home

We had one more visitor Monday night around midnight. We already had the lights off and were just settling in to sleep when the privacy curtain by the door started to open. Krista sat up and said, "What?!" and lo and behold, there's Dr Mayo, just returned from a business trip out of town. I said, "What are you doing here? You should be checking on your wife, not me!" "She's asleep already," he replied.

So we talked about how I'm doing and when I could go home. He said that once I met the last couple of PT benchmarks (e.g. traverse stairs) I could go home, maybe the next day or Wednesday. We talked a bit more about limitations, and he decided I shouldn't exceed 60˚ (instead of 90˚) on the CPM to reduce the chance of non-union of one of the bone cuts he had to make for the SDH. Other than that I basically have no PT to do until I can start bearing weight in 8 or 12 weeks, except a couple of simple exercises intended to maintain some muscle tone in the operated leg (quad, glutes, hams).

Krista and I went to sleep excited for the next day. We got going the next morning determined not to miss PT and therefore delay our departure. (PT is good but seems understaffed; if you miss them when they come for you, chances are they won't have time to get back to you that day.) PT Pam worked with me again teaching me how to do stairs ("up with the good, down with the bad") and on proper crutching technique. Then we went over some paperwork with a nurse (care instructions, sign a few things), Krista went to the pharmacy to get my Fragmin shots (an anti-coagulant I'll take for two weeks to minimize the chance of blood clots), and we worked on getting a walker. (We ended up returning the walker yesterday unused, as crutches are working fine.) At one point while Krista was packing I choked up at the thought of going home, I think for joy of being reunited and for remembering all we'd been through.

Krista called Kari to ask her to bring the van and the kids around 1 pm. They gingerly loaded me into one of the middle seats in the van since those have more legroom than the front passenger seat. All together again, we drove happily away on a nice sunny day. On the way home we got some real food for lunch and Jamba Juice, picked up a part for the minibike, and finally arrived home. I was somewhat uncomfortable due to all the driving movement and the long sit, but it was bearable. Maybe I should have taken some pain meds before the trip, but I didn't want to risk bowel trouble again.

So here we are, two weeks later, home and very happy to be together again! Thank you God!

2 weeks (SDH+13, PAO+8)

Lots happened today.....we're home!
More later.    :)

Day 13 (SDH+12, PAO+7)

Matt's doing awesome with physical therapy.  He's learned how to walk with a walker and crutches, how to pivot into a bathtub to take a shower, how to put on socks and pants, etc.

He had his catheter removed for good today, and was able to pee normally.  He also doesn't have to be hooked up to an IV anymore.  He's able to drink liquids and eat solid food again.  And the last time he took any pain medication was yesterday morning. 

He still needs more gas to be emptied from his bowels.  The nurses want to see several regular bowel movements before he's safe to go home.   We were hoping to leave tomorrow, but I think more realistically it will be Wednesday at the earliest. 

Since Matt's been completely off of pain medications today, his skin is rapidly clearing up from the rashes.  He also hasn't had as many muscle spasms.  His speech is clearer and he's not sleeping as much during the day.  His face isn't pale and has some color in it again.  It seems all the problems have been due to his body not liking the pain medications.  At home he rarely takes anything for pain so his body just isn't used to them.  Thankfully, things are gradually returning to normal for him now.

We had a visit from Howard and Doris Spear today.  And my sister, Kari, is coming to see us tonight.  It's nice to see friends and family and be reminded that this isn't our life here.  We'll sure be glad to return home.

Day 12 (SDH+11, PAO+6): feels like 3 weeks

We're making some progress!

Matt's been motivated and has been doing a great job walking.  He's been given more Miralax and suppositories and little by little he's been making small deposits into the commode.  He feels a little better and has been getting more sleep.  He still has occasional muscle spasms that are irritating, but not painful.  

Dr Mayo's assistant came to visit us this morning.  She said he's doing an awesome job with physical therapy and is amazed at how little pain medication he's needed the last couple days.

Matt's rashes are slowly diminishing and his skin is gradually looking better.  His incisions look really good too.

Our friends, the Blackstads, came by today.  I told them it's strange being in the hospital for so long.  It's like I've started another life here.  I have a certain routine such as going for a walk two times a day to get fresh air and exercise.  I've figured out the best food to get from the cafeteria, food that balances tastiness with nutrition and often get the same thing to eat every day.  Getting Matt in and out of bed to sit on the commode or go for a walk has its own routine that takes quite a lot of time.  He's not allowed to use the muscles in his right leg, so he can't lift it or move it himself.  When he's in bed he keeps his leg in the CPM machine which helps to keep the hip from tightening up.  Also, he still wears the compression socks, all of which I put back on him and turn on. 

More Matt quotes:

• Matt was getting ready to go for a walk.  I usually follow him with the wheel chair in case he needs to sit down.  This time he asked, "Will you bring the wheel barrow?"

• Matt requested some clean socks for walking down the hall.  He asked, "Can I get some more non-stick socks, I mean, non-slip stocks?"  

We heard the word "discharge" for the first time today.  Because Matt's doing well with physical therapy and his wounds are healing well, it looks like we just need to finish emptying his abdomen of gas and then we can begin thinking about returning home.

My mom and dad brought the kids by to visit again today.  Micah really wants us to come home.  Of course we are anxious to be a whole family again.

Day 11 (SDH+10, PAO+5)

Just a quick update...

We're still waiting for Matt's bowels to wake up and get moving.  The x-rays showed that his abdomen is mostly full of air, not much stool.  We've tried different laxatives, suppositories, stool softeners, enemas, walking, etc.  The doctors and nurses keep emphasizing that movement is the best solution right now.  We continue to pray and wait.

Today my Aunt Kay brought the kids to visit us for the first time.  Riding the elevators seemed to be the highlight.  Matt was pretty groggy so wasn't able to participate in much conversation.  I'm so thankful that the kids are doing well.  My sister, Kari, has been able to spend a lot of time with them and carry on with home education and "parenting".  The rest of my family as well as some friends, the Deffinbaughs, have helped to carry the load too.  It's a huge blessing to know that our children are in good hands, that I've been able to stay with Matt at the hospital and that we can focus our attention here. 

The symptoms of Matt's pain medications haven't been all bad.  My sister, Kari, came to stay with us last night and the two of has had some fun laughing at Matt.  You know how carefully Matt thinks and how modest he is:

• He was reading on his iPhone and said that the groups of words were turning into trucks and driving away off the screen.  (Just so you know, he recognizes the fact that his mind is playing tricks on him.)

• He was asking the nurse about some seepage from his wound site.  He asked, "Should my website be dry?"

• Randomly Matt asked me, "Where did you put our keys this time?"  I clarified, "Our car keys?"  "Yeah."   I answered, "The valet attendant has them."  "Oh", he said.  Curious, I asked, "Why did you ask me that?"  "I don't know," he said. 
  

• Referring to his catheter, "It's kind of fun to pee in bed!"

Obviously, it's not all funny here, but I was glad for my sister to be here and for us to have some laughs together.  Thankfully, Matt's pain is under control and he's been able to get out of bed and walk some.  We've also been able to get more sleep, which goes a long way.

By the way, I guess I didn't ever write that Matt's PAO surgery went well.  Dr Mayo was pleased with his work.  He was able to correct the hip angle to almost normal.  He doesn't expect there to be any problems with it.

The status summary is that there have been two good surgeries.  But recovery has been very difficult and not normal.

Day 10 (SDH+9, PAO+4): post PAO surgery

We didn't get any sleep last night.  Most of the time I was just standing by Matt's bed watching him moan in pain, or I was praying or crying.   I know that my lack of sleep is making me more emotional.  I've been here with him at the hospital for ten days now.   I've never seen Matt in this much pain.  On occasion he would cry out, "Help me Jesus!"   The pressure in his abdomen was so intense he couldn't imagine how it could get any worse.  We were very concerned for his health and feeling frustrated with a lack of information from the nurses.  We couldn't go forward with any plan until we heard the results of the x-rays.  But the nurse who would fill us in wouldn't be coming to see us until the morning.  We felt helpless.

At 5am the nurse finally came and said that Matt has an ileus, basically his guts are asleep from the shock of surgery and all the pain medications.  He's mostly full of extra air, not necessarily constipated.  The game plan now is to get him moving as much as possible to get things moving around in his abdomen.  That gave us a little hope and I think it was motivating to Matt because I awoke to him doing pull-ups on the trapeze bar in his bed.

The nurse also prescribed some valium which helps relieve spasms and causes drowsiness so the pain isn't as difficult to manage.  After that I think he got a little sleep.  I slept from 6-8am this morning and awoke to the nurses saying it was time for Matt to get some more x-rays of his chest and abdomen.  This time Matt used a walker to get into a stretcher bed that they used to roll him down the hall.  He did a great job with his hip and wasn't in too much pain.  I'm just glad he's able to move around a little now.

The nurses have changed his oral medications to an IV med called dilaudid.  They don't want him putting anything else into his stomach until the pressure has been relieved and he's been emptied.  So no food or drink for him today.  He's still on an IV with fluids, however.

Thank you all for your prayers and words of encouragement.  It's a huge blessing when we hear from you via email or blog comments.  I do read them all to Matt too.  It's wonderful to know that we're not going through this alone.  And most of all we are made keenly aware of our dependence upon God's mercy.  Yesterday when Matt was moaning in pain he said, "God is so merciful to us all the time."  That is true.  He is our sustainer in every way.

Day 9 (SDH+8, PAO+3): post PAO surgery

Please pray for Matt.  I'm really concerned for him.  I think today was the most eventful day so far.  Matt has a lot of discomfort in his abdomen and lots of pain in his hip when he moves.  Today's events were primarily attempting to deal with these two problems.

He's continuing a routine schedule of taking two primary pain medications oxycodone (every 3 hours) and oxycontin (every 12 hours).  He's also given vistaril (every 4 hours) to help amplify the effects of the pain meds.   To keep on top of this schedule we're using our iPhone to set alarms so we or the nurses don't forget, especially when we're trying to get a precious few moments of sleep during the night.  Our iPhone has been a wonderful thing to have here on a long hospital stay.  I've used it to take pictures, check email, make phone calls, look up information, etc.  These medications make Matt very groggy and sleepy.


The nurse gave Matt an enema today.  We hoped it would loosen his bowels to bring some relief from his huge bloated belly.  He must have sat on the commode for an hour but there wasn't much to show from it.  All that sitting cut off the circulation a bit to his legs and as a result caused red blotches all over his legs.

Matt's diet today has been mainly clear liquids.  He's afraid to put anything else into his stomach and add to the discomfort.  He's also been a little nauseous and is afraid he'll chuck it all up.  

Dr Mayo is going out of town so he asked a general surgeon to come look at Matt's abdomen.  Dr Lynch ordered chest and abdomen x-rays.  Matt is in so much pain from his hip that we talked the technician into letting him come get his x-rays on his bed instead of having to get in and out of a wheel chair.  I helped a man wheel Matt down and around the hall in his bed.  Again we heard someone rave about Dr Mayo.  The technician who took the x-rays said that Dr Mayo is a phenomenal surgeon and does precision work.  We're waiting for the results of the x-rays.

Matt had his catheter removed this morning, but hadn't urinated all day.  I guess it's quite common to be unable to pee afterward.  The nurse decided to do a bladder scan to determine if Matt was full of urine.  He was indeed.  They inserted a straight catheter to empty his bladder.  They measured about 975 ml of urine.  That helped to relieve him a little.

Matt has developed a new rash on his stomach.  When Dr Mayo came to visit us this morning he said it looks like some sort of chemical reaction.  Thankfully neither the rash on his stomach nor the rash on his back is bothering him.

The nurse removed Matt's hemo vac (tubes inserted near his surgery incision to expel extra blood) today.  It's nice to have less tubes and contraptions to deal with now.

Today the physical therapist came to see Matt while I was down the hall for a little break from the hospital room.  They got him into a wheel chair and he came down the hall to surprise me.  The excitement didn't last long though because of intense pain in his hip.  Matt said it felt like his hip was made up of little sticks that were breaking.

The nurses often ask Matt to rate his pain on a scale of 1-10.  I think he's rating his pain too low.  He said a ten on his scale would be for someone to rip his femur out of its socket and beat him with it.  I think the lady next door has a different scale.  I overheard her say that her pain was at a five or six, as she explained to the nurse with a cheery and enthusiastic voice.

At 9pm we were notified that Matt was to be taken to get an ultrasound.  Evidently this is routine for Dr Mayo's patients.  He wants to make sure there are no blood clots in Matt's legs. 

When we arrived back from the ultrasound, the nurse gave Matt some Miralax, a laxative formula.  We're hoping it will get his bowels moving to bring him some relief.   It's already 11pm and nothing has happened yet.  I think it's going to be a really long night.