Monthly Archives: April 2012

Home

It’s been a busy few days of low-key living.  That’s really the only way to describe our first days at home.  Reece has done very well, all things considered.  We have been to clinic for the last three days, which has been exhausting for him.  It is so much more activity than he is used to…when he gets home, he basically has to nap for an hour or two.  His temps have been down, his weight has been down.  We have fared pretty well with managing medicines and procedures out of our home.  We knew it would become more routine and it has, although we still have a long way to go to get into feeling normal. 

A few things are concerning to me.  First, Reece’s appetite has decreased in the last couple of days.  Second, he has been vomiting at home, although he has no fever as of yet and no other signs of illness.  Third, he is on a massive amount of diuretics, which are annoying his kidneys.  I believe that these things will resolve themselves, but it would be good to see that resolution soon.  His diuretics have begun to be tapered already. 

Yesterday was my last day in clinic until I have the baby.  I go in this morning to get the final game plan, but if all else fails, I have a c-section scheduled for Monday morning.  Last Monday, the baby had flipped into the correct position, but had not dropped, so they would not induce labor.  If she is still in the correct position (I am very skeptical that this is the case), they will begin induction on Sunday evening.  If not, they will proceed with the version/c-section plan on Monday.  Regardless, I am ready to go; I still can’t believe that we will have a newborn in a few days!

Britta will be back to our home next week–yay!  Hooray for my two-year-old and all of her energy being back in our home!

It’s strange being at home right now, but a good strange.  It is the calm before the storm meets the calm after the storm.  I realize that anything can still happen with Reece’s health, but now that things seem to be leveling off a little, it almost makes me feel more paranoid that it will all be snatched away.  Truly, I feel more on edge about “smaller” things with Reece than I did in the hospital and more on edge about the baby (especially if she is moving, paranoia about the birth, etc) than I ever have before.  I chalk it up to the realization about the fragility of life.  I know life doesn’t work this way, but again, when the benefit of the odds being with you has not transpired as such, you begin to feel like that benefit will never be with you.  It isn’t rational, but it has been a part of our reality for so many months that it will take some work getting back to relaxation regarding life.  Additionally, our family feels like it is in infancy again.  It takes many hands to make our life run right now…doctors, nurses, family members, friends, nanny, cleaning lady, grocery delivery, home care people.  I hope we continue to trend towards independence for our sake and the sake of all involved.  When I first left my home after high school, I struggled with the independent nature of adulthood.  I craved having people help me out–I wanted, in some odd way, to not be left to my own devices.  Now, well into adulthood, I realize what a gift it is to be able to manage one’s life independently.  It’s a sign of health–all around health–when you aren’t having to rely on other people just to get through the daily tasks of life. 

Is it possible that next week our family of five will be together?  I am praying that it will happen.

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Discharge.

Oh yes, it’s true, Reece slept in his own bed last night.  Three months to the day after Reece’s transplant, we made the trip back to our home.  We weren’t certain that yesterday would be the actual day, but it was!  And after 102 days of sleeping in the hospital, all Reece said when asked by the nurses if he was excited to go home was that he was “going to actually sleep at home tonight!”  I would love to report that it was a restful night, but I am running on less than four hours of sleep, so please forgive me if my post isn’t reader-friendly.  Pregnant women aren’t designed to function well with this little amount of sleep.

I’ll begin by saying that Reece–we all–had a very good weekend.  Reece visited home both Saturday and Sunday.  These home visits were slightly different as my parents and Britta were in the house with us.  Reece and Britta were absolutely adorable together!  When we went to the hospital to pick up Reece on Saturday, he wanted her to get in his hospital bed.  She did so and I will never forget how much they enjoyed seeing one another.  We put Britta in bed with Reece and he was beaming.  He even leaned over and kissed her–out of the blue!  It brought tears to my eyes…we asked him to give her a kiss again later and captured it in a photo.  They were able to spend time together at home as well.

Reece kisses Britta!

They've missed each other

Hi.

On Sunday, upon leaving the hospital, Reece requested that we go to Chipotle and eat in the restaurant.  Since our primary physician has basically given us the “go-ahead” on this (with many caveats), we decided that we would try it, since Reece was requesting to do so.  We ate in a completely enclosed patio area where no one else was eating in, clorox-wiped the entire table and chair down, stayed only about 10 minutes (since Reece was ready to go)–all around the un-busy hour of 3 pm.  It worked out well, but was somewhat nerve-wracking.  Both the attending physician that is on and the nurse were surprised and maybe not entirely happy with our decision.  Every doctor has a different opinion on this.  However, we have to begin to do some things and we felt it was the right choice.  I told the doctor on Sunday, that I was going to plan on Monday for discharge.  He was non-committal, but Reece’s weight seemed better-managed and I felt strongly that someone needed to pull the plug.

I wasn’t in rounds yesterday due to my OB appointments, but it sounds like it was pretty non-eventful.  Even the discharge discussion was slow-going.  Yet by the time I arrived at the hospital around lunch, the wheels were moving to get Reece out of there.  What a process it was!  We had an oxygen vendor to discuss his home oxygen, a pharmacy consultation to discuss his 24 meds he went home on, we took him up to clinic to get his weight on the scales up there (to ensure consistency), Reece was given his one IV med so that we didn’t need to deal with it at home last night.  We practiced checking blood glucose on our home glucometer and finally, we made it out the door around 6:45 pm.  Our nurse that discharged us just happened to be the nurse that admitted us back in January–it was fun to have her as our last nurse in the hospital.  On our way out of the room, many of the nurses gathered to wish Reece well.  They sang a discharge song with noisemakers, similar to what you might hear as a birthday song at TGIFridays.  They made a tunnel to push Reece through on his wheelchair.  I think Terry and I both felt we were in the clear as far as tearing up.  But then our nurse stopped us and crouched down to look Reece right in the eyes and wish him luck.  Tears for all of us were unavoidable.  I so vividly remember our first day, having her get Reece all checked in, feeling uncertain about all that was about to transpire.  To be on this side of transplant is such a relief.  So we walked out tearfully happy and made our way home.  Here’s the photo taken of us right before Reece put his mask on and got into the wheelchair.

Happy to be going home!

We knew it would be a lot of work when we got home, but it is a LOT of work.  Just his medicines alone are a lot of work.  It’s a little different from giving a dose of Tylenol.  First, these meds are essentially keeping him alive…treating GVHD, suppressing his immune system to prevent more GVHD, warding off infections, keeping his nutrients level, helping his organs function correctly.  Not only are they timed differently throughout the day, but checking and double-checking is important.  Thankfully, he only has one IV medicine and he is not on TPN.  Additionally, he has blood glucose checks.  We had the oxygen tank people come by later last night and the medical supply people drop off line maintenance supplies even later.  By the time we got everything organized and set-up, Reece was completely tired out.  I didn’t make it to bed until 1:30 am (after Reece’s nightly glucose check) and awoke at 5:30 for his early morning glucose check.  Thankfully, Reece’s doctor told us at clinic today that we didn’t need to check his glucose overnight any longer.  Thank.  Goodness.  Although when we have a newborn in another week, we’ll likely be up anyway!

Reece slept pretty well last night, although he was still up in the middle of the night chatting with Terry and getting used to his “new” surroundings.  We were at the clinic mid-morning, which provided more activity level than he has experienced in months.  If we can manage to stay out of the hospital and keep up the outpatient routine, I suspect his recovery will take off.

Reece has another marrow engraftment study that will be two weeks from now.  We are holding off due to baby’s arrival next week and to give Reece’s lungs some additional time to heal prior to going under anesthesia.  We did not do his Day +60 engraftment study due to his lungs.  I suspect all will turn out well, but it is obviously nerve-wracking for us as this will continue to reinforce that Reece is in remission.

We appreciate your continued prayers:

  • Praise for discharge!  What an answer to prayer!
  • Protection from infection and complications
  • Complete healing of lungs/no more issues with fluid and weight
  • Remission and life

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Day Plus Eighty-Eight

It turns out the Reece’s weight–surprise!–went up over the last few days and he had some breathing issues yesterday.  So, the doctors pumped him up with diuretics and it is back down today.  His breathing is ok, but they need to take a few days to figure out what type of diuretic combination will help him keep his weight down.  I’m just going to say it–these damn steroids are driving me crazy!  Sorry, but it had to be said.  I feel strongly that once he gets home and starts moving around more, his body will become much more proficient at managing his weight.

Other than the weight/breathing issue, he is looking good.  He has done pretty well off the TPN, so hopefully that continues to go well.  He finally slept last night which means Terry got some good sleep–when Terry gets good sleep, everyone is happy.  🙂  We aren’t coming home this weekend, but hopefully early next week.

In baby news, I received a call from my OB yesterday who said she would be open to have a doc try an external version on the baby, just prior to a scheduled c-section, to see if the baby will turn to the right position.  If she does turn, they would induce me that day; if she does not turn, they would proceed with the c-section.  There are risks to both the version and the c-section, but I am happy that I have another option.  I met with a different OB (again, my OB no longer delivers babies) this morning to schedule both the version and the c-section.  It turns out that the day she would be able to do it falls on a Sunday and the OR will not schedule c-sections on a Sunday.  So, they are 99% certain that we will be scheduled to proceed on Mon, April 30, assuming I can get in on the schedule with one of the docs who will be in the OR that day.  I should know this coming Monday what the official day will be.

Prayer Requests:

  • Reece’s weight issues to resolve; doctors to find the right combination of diuretics to keep him stable
  • No further lung issues; resolution of breathing problems
  • Successful taper of steroids; no further flare-ups; protection from GVHD
  • Protection from infections and fevers
  • Continued progress in BMT
  • Discharge, remission, life
  • For Baby–healthy delivery, general health
  • For Family–peace and sanity among complete shake-up in life circumstances

Many thanks.

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Here’s the Long Answer

I want to shed some light on what has been on my mind, what we have been discussing with the doctors, and how delicate this process is. Instead of giving you bits and pieces, I am going to do my best to paint the entire picture. In doing so, you will hopefully understand why I have some specific prayer requests that are taking the spotlight today and over the next several days. After I put this amount of detail into explaining it, you should get a good picture of why Reece’s particular situation is so complex and why he continues to be in the hospital.

Background:

  • First, for the majority of our hospital stay, Reece has been on IV nutrition which is called “TPN”. For much of the time we have been here, he has had no desire to eat anything, like most of the kids that are here. At times he has been on 24 hours of TPN. Right now, he is on 12 hours of TPN (the lowest time setting you can be on before they take it off completely).
  • Second, he is on a steroid for his GVHD. Steroids give you a boost in appetite, so often times when people are on them, they gain weight for that time period.  Reece’s body’s reaction to the steroid is difficulty in regulating blood sugar.  He has high insulin needs because of it.
  • Third, Reece receives insulin added in his TPN to compensate for the sugar he receives through it. It is a very high dose of insulin. Additionally, he receives insulin “adjustment” shots if his blood sugar is too high, but the TPN sugar he gets overnight is generally balanced by the insulin that is added.
  • Fourth, Reece is not a big eater. He is eating 600-800 calories per day on his own, which is a lot for him. He is a child who couldn’t care less about eating. Since birth, it has been a constant negotiation with him to eat food. We bargain, we strategize, I don’t give many snacks in the day in order to get him to actually eat during mealtime. In fact, he still prefers that I feed him bites versus him feeding himself (even before hospitalization).

Keeping all of that in mind, the other tricky deal with this is that his lungs are incredibly sensitive to his weight gain. Reece has weight gain from steroids to some extent, but mostly, he is retaining fluid. During BMT, cells become weakened and can leak fluid into tissue. This is very common on this floor. When Reece was admitted, he was 17.1 kilos (1 lb = 2.2 kilos). Today, he is around 20.5 kilos. It is when he gets upward of 21 kilos that his lungs really struggle. In an effort to keep his weight down, they will give him diuretics, so that he urinates more frequently to get the fluid off. However, the more diuretics you give, the more irritated your kidneys become as they get dried out. Lungs like to be dry, kidneys like to be moist. So they are trying to find the right balance of getting the fluid off without making his kidneys so agitated that there are problems.

Because he is so sensitive to weight gain, it is important to consider how much fluid is entering Reece’s body. They monitor what he drinks, but he is allowed to drink as much as he needs. They want him to resume normal eating and drinking. The other two major sources of fluid are from red blood and platelet transfusions and, our good ol’ buddy, TPN. Clearly, there is no option with his blood transfusions. He has parameters higher than most for platelets (as a precaution for his hemorrhage–although they have greatly reduced that to almost the “normal” parameter for the other BMT kids). He needs to receive blood to survive, so there is no way to adjust that. However, the TPN is a much debated subject and was no exception at rounds this morning.

I have been chatting about the TPN for days with the doctors, trying to figure out at what point they judge whether or not to take a child off of it. My two cents, as Reece’s mom, is that if they are looking for his appetite to increase even more before they take him off, it’s never going to happen. This is the most he is going to eat without the removal of that bag of fluid. I’ve never heard Reece talk about food this much. Sure, he only eats bites of things, but he is talking about eating all the time and clearly very interested in doing so. Additionally, TPN is like grazing. Reece is given a distribution of calories over a 12-hour period. It’s like snacking all night long. Therefore, he snacks throughout the day as a way to even out the 24-hour period. I don’t see how he will actually eat a full meal until his body is motivated to eat more with the TPN removed. The best reasoning I have received from a doctor as to what other benefits TPN serves in replacing calories is that Reece’s body needs additional calories to heal. That is a decent answer. However, I still haven’t heard what parameters they use to judge how to take him off of it. We are rapidly approaching Day +100…it isn’t like he just had his transplant a few days ago. The biggest kicker to me is the amount of additional fluid he receives via TPN. For a kid who is fluid-sensitive, this is my first thought in trying to get his fluid intake down, as long as he is eating. And the eating part is where I feel my mom-expertise is important. No one has eaten more meals with Reece than me. A standard answer for any question up here is, “Every kid is different. It depends on the child.” Ok, well, let me help you understand how my child is different. That’s part of my job here.

All that said, I have pled my TPN case with the doctor–multiple doctors–on several occasions. This morning, it was quite a lengthy conversation during rounds between probably 10 different people. They essentially came to the same conclusion as what I outlined and decided to cut his TPN nutrition in half. He will still get it over a 12-hour period, but it will be reduced. I hope this is the right decision. I stepped back into the room and thought, “Oh boy, if this doesn’t go well, we could be here several more days trying to iron this out.”

Another key discussion point in rounds this morning was Reece’s hospital departure.  We are planning on Saturday or Sunday, assuming things hold steady or improve.  I think part of the doc’s hesitation on the TPN is his desire to hold steady and find the right balance in order for Reece to get out of here.  So, I really hope this doesn’t throw everything out of whack and cause further delays.  I am a big believer that we can never replicate through drugs, machines, and other unnatural methods, what God created to be.  Thus, the body needs to at some point work on its own.  Side effects from BMT are because of things that have been done to Reece, not because of his MDS.  It’s a trade-off, but I feel strongly that once his body gets the chance to click in, it will.  I hope I am right.

Additionally, I was given the schedule for Reece’s steroid taper today.  It has him slowly tapering down until he is off of it completely by mid-June.  As soon as I picked it up and began looking at it, I felt the need to pray over it.  To have his body completely rid of GVHD and to not have any flare ups as he tapers down is such a desire of my heart.  The steroids are key to getting rid of GVHD, but they are also creating his need for insulin and working against lung progress with the additional weight gain.  I’m not even entertaining the reality of long-term side effects from prolonged use of steroids.  They need to be done.

So, if you feel like there are many plates we are trying to keep spinning, that is basically where we are at.  Everything is intertwined.  On top of the things I normally request prayer over, here are the two things tugging at my heart today:

  • TPN wean to be helpful, not harmful.  That it alleviates his fluid retention and doesn’t cause further delays in the hospital.
  • Reece’s GVHD to be completely gone in his body with no flare-ups as the taper begins.  No further setbacks that require further steroids than what he has already had.  Reece to be done with steroid creams with no further problems.

Thank-you for your faithfulness in praying for Reece and our family.

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A Quick Update

It’s been a few days, so here’s a quick update.  The weekend overall went well for Reece.  He continues to recover from his latest oxygen bout, but overall, he is doing very well.  We are starting to feel trapped in the cycle of Reece gaining momentum, having a minor setback, new doctor rotates on, takes awhile to get up to speed, delay because of predictable and avoidable complications, another minor setback, and so on.  Hopefully, we will be out of here this week, but I’ll admit I am not planning on it.  You can tell Reece has maxed out on his being here and ability to be motivated to improve while here.  You can’t blame him–he is the veteran on the floor.  No one else has a transplant date even remotely close to his, although there are a few kids that have been discharged and have returned.  His recovery will likely increase dramatically once is at home and able to be in a different environment.  I’ll keep you posted.

Prayer Requests:

  • Complete wean off of oxygen
  • Continued progress in BMT and freedom from fevers/infections
  • Regulation of weight to avoid further lung setbacks
  • Discharge, remission, life

In baby news, it looks like we will be scheduling a c-section, as this baby does not want to go into the proper position.  It isn’t because she can’t move around.  She has done a complete 360 degree turn in the last week–but has stayed in a breech position.  She looks good when she is monitored, but I am meeting with a doctor this Friday to schedule the c-section, in case she doesn’t turn and go on her own.  The good part about that is I will know who will be delivering the baby (my doctor no longer works in labor and delivery) and I will be able to prep her for the cord blood collection.  The not-so-good news is that Reece has many physically demanding needs…both for him and for us.  Adding a c-section into the mix seems like one more added complication.

Prayer Requests:

  • Baby to turn to correct position
  •  Smooth labor, deliver, and recovery
  • Overall health for baby

Thank-you.

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Day +81

It’s hard to believe we have been here 92 days. 81 days post-transplant+Day 0+10 days pre-transplant=92 days of hospital Shangri-la.  The last two days we have had a setback that will delay the d-word.  Reece is fluid-up and tends to be quite sensitive to his weight.  Yesterday a CT scanned revealed fluid leakage in his lungs and fluid retention in the lining of his lungs.  Therefore, he has labored breathing and is needing blow-by oxygen, at times, to keep him comfortable.  All other things are looking okay at this point, so there is no indication that it is another hemorrhage.  Still, we will be here until at least early next week.

Prayer Requests:

  • Reece’s weight to come down and stabilize
  • Fluid to clear from Reece’s lungs and supplemental O2 needs to be removed
  • Healing and improvement in all things BMT
  • Reece’s rash to leave for good and steroid taper to go well; insulin needs to go down
  • Remission, life, and discharge

I’m not sure there is much else to say on this.  We have been here long enough and are so used to being here that it is what it is.  I am full-term on Sunday, so if the baby comes, the baby comes.  I have completely surrendered to this process, so it doesn’t feel stressful to be here.  I feel more stress in going home and managing everything without the nurses, docs, and machines helping us out.  We have additional time to practice caring for him here before we are sent out to do everything on our own.  I said it before and will say it again…we will operate similarly to nurses in our home, but with very little training.  Additionally, the control freak in me is struggling to comprehend all that we will be required to do and then be out of the loop for a couple of days at the hospital for the birth of bambino #3.  I would almost rather have her before Reece leaves the hospital so that when he does come home, we are all there for good.  It’s our thirteenth weekend here, so we know how the routine in the hospital goes; it’s the routine at home that seems daunting.  I still more than anything want him home, so I hope it is early next week.  Reece’s body will tell us when he is ready.

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Getting Close

Well, friends, I am happy to report that things have continued to go well.  Reece has visited home for three days in a row and he is basically approved for daily home passes unless anything changes.  Terry and I are in education classes this week to make sure we know how to do the many things that will need to happen at home–flushing out Reece’s line, cleaning his dressing, hooking up nutrition through his line, administering IV meds, and checking blood glucose/administering insulin.  It sounds like a lot and it is.  I feel like we should be getting honorary nursing degrees.

The d-word has finally come up in conversation–looks like they are planning on Sunday or Monday, barring any fevers or new developments.  It is an understatement to say that we are ready.  He still has a lot of work to do outpatient and this next leg of the journey will be complex as well.  Going home now will be excellent timing in regard to home prep and baby prep.

This baby is not far off from entering this world.  I have spent a ton of time at the doctor already this week.  Monday, I had an ultrasound that revealed she is about 2-3 weeks behind.  She is also sitting in a transverse position (across my body), versus having moved to the head-down birthing position.  I have been contracting pretty regularly.  All three things considered, my OB called perinatology (high-risk pregnancy docs) on Monday to see if I had a c-section in the works for the day.  Thankfully, they did a non-stress test and ordered a biophysical profile (ultrasound where they monitor the baby’s movements) and she passed with flying colors.  I was told not to do any more exercising and basically given the stink-eye for even considering walking around the lake.  I do feel ready to roll here, although I would still be a bit early at 36.5 weeks (which is the same time I delivered Reece, although I was induced).  I hope this gal figures out where to go so that I can avoid a c-section if at all possible.  I have many friends who have had them without problems, but I am used to the standard delivery method, so I would prefer to do that.  I am getting super excited!!!

I am struggling a bit with reintegrating Reece back into society.  I know that he looks physically different, but at the hospital, he looks like all the other kids.  I remember the first time we visited Amplatz for our consultation and seeing the physical differences in the kids who were post-transplant.  It was shocking to me, although I knew better than to stare at them and I was also trying to come to terms with what lay ahead for Reece.  The general public will likely not do so well from a staring perspective and it will take some real effort to not feel confrontational about it.  Additionally, he is not acting like his normal self, so the kids that Reece knows will not be used to him at all.  I know kids deal better with these types of things than adults do, so in Reece’s words I need to, “take a chill pill”.  In our best case scenario, Reece will not look like himself until the holidays.  I am hoping as his energy returns, we begin to see more and more of his personality return.  All-in-all it will be about a year of him looking and acting different from his normal self.  Yes, it will be worth it, but it is still hard as a parent and certainly a difficult thing for him to manage.

We continue to ask for your prayers:

  • Reece’s GVHD rash to be gone and not return as he begins to taper his steroid dosage
  • Continued improvement in all things BMT
  • Protection from fevers, side effects, and infections
  • Remission & life
  • Discharge as planned and a smooth transition home

Thank-you.

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