PICU

We knew our trip to Portland would be eventful, but not this eventful.

The surgery follow-up appointment went well - we now know how to replace Oliver's g-tube ourselves. 

The IV placement for the DMSA scan did not go well, but after eight tries and trying all three of the top teams of nurses they finally got and IV into Oliver.   It took so long that we had to reschedule our doctor appts. for the next day.

The DMSA scan went very well - you can see the gamma camera in the photo above; Oliver is the burrito bundle in the middle.  The scan showed that Oliver's right kidney has grown slightly and is functioning at full capacity.  His left kidney, however did not show up at all on the scan, meaning that it has absolutely no functioning kidney tissue.  This is good news - the doctors have agreed that we will not be removing the bad kidney because in situations like this it will atrophy, shrivel up, and eventually go away.  It is also good news because the doctors expect this means that Oliver's hypertension will go away too. 

During our time in Portland, Oliver grew increasingly cold, listless, and had greater and greater spells of turning very pale.  At first we didn't think too much of these symptoms because cold feet is a common side effect of one of Oliver's medications, he is normally a very sleepy baby (and often gets overstimulated and "shuts down" on days like a big hospital visit), and he had been poked so many times that I wouldn't have been surprised if he turned pale!  But these symptoms worsened over Tuesday night, and by the time we saw the phlebotomist team on Wednesday, they confirmed that he looked worse than when they had seen him on Tuesday and helped us get checked into the pediatrics clinic across the hall.  We were seen quickly, and the nurses hooked him up to monitor how fully his blood was saturated with oxygen.  Healthy saturation is 100% and means that your lungs and heart are working properly to get oxygen to all parts of your body. 

Oliver's saturation would dip as low as 70% during a severe spell of going pale and getting cold.  This was not good. They soon admitted him to the Pediatric ICU (PICU) and he was visited by swarms of doctors, residents, nurses, cardiologists, and others. 

I won't go into the full details, but basically they think that all of Oliver's symptoms indicate that he is fighting sort of severe infection, and because of all his medical conditions his body is having a more difficult time battling the bacteria or virus.  They are doing a host of blood, urine, and respiratory cultures to try to discover the culprit. 

In the meantime, Oliver requires a ventilator with oxygen and nitric oxcide to breathe (the nitric oxcide keeps the ventilator from worsening his pulmonary hypertension), a "bear hug" warm air blanket to maintain his body temperature, and a blood transfusion to keep the IV fluids from watering down his blood too much (his red blood count was dropping).  They are doing regular chest x-rays and echocardiograms and additional blood cultures every time he spikes a fever.  Since he is so difficult to put and IV into they've also given him a PICC line; a semi-permanent, larger IV line that taps into a larger vein than a normal IV.   He's also heavily sedated and being given pain med so he can tolerate the ventilator breathing tube and to help him rest.  (Now there are even more monitors/equipment hooked up to him that you can see in the photos.)

He looks terrible.  Bloated and pale and sick.  Even so, we are very encouraged with the excellent team of doctors and nurses that are caring for him (and for the handful of other medical personel who have taken a liking to him, like the phlebotomist who came over to his PICU room today just to give him the puppy dog you see in the photo below). 

It is also encouraging that he is behaving and responding in a manner very typical of a severely infected (or septic) child, so we can have a bit of an idea of what lies ahead.  As the infection runs its course and the antibiotics and meds kick in they expect him to get worse  before we start seeing any notable improvement.  We expect to be in the PICU until Monday, and in the hospital probably a few days more (with a strong emphasis on the words expect and probably).

We are so thankful that we were already in Portland when this happened, and that Joel's mother was already in Medford to care for the girls.  We are doing well, resting the peace that passes all understanding, remembering the God of all comfort, and meditating on II Corinthians 1:3-11.  Please keep us all in your prayers.

CDRC Developmental Assessment

Two weeks ago Oliver was seen by the Child Development and Rehabilitation Center (CDRC).  Like our cardiologist and nephrologist, they are based in Portland but thankfully have clinics in Medford.  The geneticist who saw Oliver back in July was also with this group, but this was our first time seeing them for a developmental assessment. 

Their evaluation was simultaneously disheartening and encouraging.  I guess I'm getting used to having confused and conflicting emotions.

Oliver is now 6 months old, but was born a month early so that puts his adjusted age at about 5 months.  For gross motor abilities he is developmentally comprable to a 7 week old baby.  I have known that his gross motor abilities have regressed since his hospitilizations, particularly that he doesn't lift his head near as well as he used to, but this was still difficult to hear stated officially.  The good news accompanying this evaluation is that he seems to be moving like a NORMAL 7 week old baby.  In other words, it does not appear, at least so far, that he has some condition that impairs his motor ablility; he is simply delayed and they expect that he will eventually be able to catch up.  This may make sense considering his persistent sleepiness and disinclination to be on his tummy after have his g-tube placed.  We'll start working with Early Intervention as soon as the paperwork goes through.  They'll come to our home to do therapy with him and teach me how to do it too.  We're also looking into working with a private therapist in the meantime. 

See how tangled up the emotions are?  Our son is pretty far behind BUT so far it appears to be simply a delay and not a disorder.  So there is great hope that he can catch BUT it means a lot of therapy appointments, home therapy to add to my daily routine, and even more paperwork.  But he is totaly worth it. 

It was also difficult to have the doctors confirm that he has a vision problem (more conflicting emotions: yep, one more thing to fix on the baby! - that's the dissapointed sarcasm, but it is accompanied by the wave of hope of thinking "that may be why he hasn't smiled yet!  He can't see us well!").  His extropia (opposite of cross-eyed; his eyes look apart) seems to have worsened rather than improved as he's gotten older, so we've added an appointment with the Casey Eye Institute at OHSU in Portland when we'll be there in a few weeks (yea, I just love coordinating even more appointments! / I'm so thankful we have so many experienced specialists working with our son and that we're catching so many of theses issues right away).  You can see the problem with his eyes in this recent picture:

His recent check-up with his cardiologist showed that his heart contiues to function well in spite of all the abnormalities. 

When I took him in for his bi-monthly pediatrician last week I realized I have been so preoccupied with managing Oliver's medical care that I forgot to take the girls in for their annual check-ups!  Our doctor and nurses had a good laugh with me over that today.  There'll all scheduled together now for one big visit next week.

We didn't quite miss out on summer...

 

Thanks to the warm September weekends we finally made it to go play at a lake before "summer" was over.  Since school had started already we practically had the place to ourselves!

 

 

 

Elsa did not want to leave.  Her pout was classic.

 



Maid Marian

For several days lately Elsa has refused to answer to anything but "Maid Marian."

 

 

Even poor Nora, who has finally started calling her "Essa" instead of her endearing "Tata," is now referring to her sister as "Essa Mare-ian."

What a drama queen.  I can't imagine where she gets it. 

His g-tube fell out!

In summary, Oliver's g-tube fell out, and we had an unexpected trip to Portland to get it replaced. 

When I went to start Oliver's 2pm meal last Wednesday he was sleeping soundly.  I unbundled him as usual so I could hook up his feeding tube only to find that his g-tube (the short tube that gives direct access to his stomach that was surgically placed last month) had come out!  This was NOT supposed to happen, especially in the first 6-8 weeks after it was first put in.  At that point we'll be trained to put it in ourselves, but until then the stoma (the opening in the skin and stomach where the tub in placed) is still healing and we were given instructions to head straight to the ER if it came out.  So within about 15 minutes I had called for a dear friend to come sit with the girls, filled a bag with all of Oliver's necessities, and Oliver and I were headed out the door to the ER at Rogue Valley Medical Center (RVMC).  Joel joined me there.

Unfortunately I'm not sure exactly when the tube fell out - it could have been anytime after 11 am when I fed him last and he fell asleep.  By the time we got into a room and were seen by a doctor and the ostomy nurse it could have been out for as long as 4 hours, and a new stoma can start closing in as little as 20 minutes.  They tried right away to fit the tube back in but were unsuccessful.  We called up to OHSU (Portland) for instructions, and they were willing to talk the nurse and doctor through a procedure to dilate the opening, first using a smaller diameter catheter and then easing up to a larger one, but nurse said the hole looked fully closed and they did not want to try it.   The surgery nurse at OHSU gave us instructions to head to Portland right away and check into the ER for the children's hospital when we arrived.  The doctor and nurse at RVMC said we could feed him using a nasal feeding tube because the stoma looked closed, but OSHU recommended not feeding him in case they found they needed to do some procedure that required an empty stomach. 

Praise God for our friends who could help us a such short notice!  Elsa and Nora got to stay at home and a friend came over to stay the night with them and care for them the next day.  We weren't sure how long we would be gone, but God has blessed us with such wonderful "family" here that we were confident that the girls (and cats!) would have been cared for. 

We made good time on the highway and arrived in Portland 5 1/2 hours later.  Even though he must have been hungry, Oliver slept the whole trip.  We spend about half of the time driving praying together for our son.  A g-tube is a simple matter in the medical world, but Oliver is not.  We didn't know what the doctors would need to do to salvage his g-tube site, or if it even could be salvaged.  We prayed that we would not have to make a decision about whether put him under anesthesia again for non-vital procedure considering what happened last time, and if we did have to make a decision that it would be very clear to us what to do.  We knew we could have just gone back to using a nasal feeding tube - it would have been terribly inconvenient and annoying, but he'd still get fed and not have the risk of surgery.  We also prayed that God would open the stoma so they could just put the g-tube back in and we could go home.

We checked into the ER at 10:30 pm, so his tube had been out for 9 to 12 hours by then.  We were seen shortly by the pediatric surgeon.  She first tried to put the original tube back in - it is a size 14.  It didn't go in.  Then she tried a slightly smaller, size 10 catheter, and it went it!!!!!!!!  Alleluia!  We then had to wait a while to have an x-ray done to confirm that the catheter was in the right place and that the original track had not become separated from his stomach. In the meantime five (or six?  I lost count) futile attempts were made by three different nurses to give him an IV.  They wanted to be able to give him fluids right away and overnight until the surgery team could do their evaluation since he hadn't eaten in 12 hours.  But, since he had not eaten in 12 hours he was rather dehydrated and even more difficult to poke than usual.  Thankfully the x-ray showed that the catheter tube was in the right place and the doctor working with us said we could start him on a slow drip feed for the rest of the night, so he was able to get away without an IV! 

We got to our room by 2am, let the nurses start Oliver's meal, and went to sleep.  We stopped his food in time for him to have an empty stomach by the time the nurses came to dilate his stoma to the correct size for his g-tube.  They did it in two or three stages, but I don't know for sure because I had to leave the room.  Oliver usually cries when he gets poked for labs and IVs, but this was definitely a different level of pain for him.  We talked to the doctors about anesthesia before hand but there wasn't anything they could do locally that would help.  It was a very short procedure, less than ten minutes, but I just couldn't listen to him and I was so tired I just had to leave.

We gave him one regular full meal and then were discharged by 5pm.  We drove home, relieved our friend of babysitting duty by 11pm, and fell into bed.  Joel had already planned to take the next day, Friday, off, and we spent the day playing with the girls and sleeping.  Then on Saturday I had to take Oliver in to the pediatrician unexpectedly because of a concerning lab result, but thankfully we were able to reach the right doctor for consultation and Oliver's doing fine.  I feel like I'm just finally starting to catch up from our sudden trip.

Aside from the adventure of his g-tube falling out, Oliver's tube feeds have been going very well.  He still is eating only breast milk, and I've been slowly increasing his daytime meals and decreasing his nighttime drip feed.  I figured that our girls had both slept through the night for several months by this age, so why not see if Oliver could "eat" all of his food during the day too.  I do not do well on interrupted sleep, especially not for five months in a row, even though Joel and I take turns getting up to refill his milk and restart his pump. 

Finally our goal has been reached!  He now gets all his food during six "meals" during the day and none at night!  This is a pretty big deal because usually tube fed babies cannot tolerate large meals (or bolus feeds) very well and do best on slow, overnight drips when they are sleeping, so we were told that we probably wouldn't be able to eliminate the night feeds. 

Oliver has always "slept through the night," and now we'll finally get to!   Whahoo!

This is Oliver watching his first "movie."  Elsa entertained herself that afternoon making movies on our Flip camera and showing them to Oliver. 

Officially Two

Nora turned two for real on August 26th.  I almost forgot the actual day - friends at church were reminding me that Sunday!  My excuse is that we had already celebrated earlier in the month when my family was here, but, c'mon, I've only had two years to learn it!  (Oliver's birthdate, on the other hand, is engraved in my memory since it serves as his identification in the hospital.)

Nora is bursting at the seams with energy and spunk, and it is delightful to get tidbits of her perspective and humor as she makes active use of her growing vocabulary.

Happy Birthday, little fireball.

 

She enjoyed opening her remaining presents on our back swing.  Big sister was, of course, eager to help when needed, or even if not needed:

 

 

She received her first apron from my sister and her husband and she was very excited to wear it when we did our baking the next day.

 

 

They got a little goofy while waiting for me to get out the ingredients,

 

 

and then resorted to playing pirates when I had not given them anything to stir yet with their spatulas.

 

 

 

First solid food!

Oliver got his first taste of "solid food" a few weeks ago, thanks to his sister's help while I was picking blackberries a few yards away.  Elsa came running up to me, "Mommy, mommy, Oliver does not like blackberries!" WHAT?!?  He wasn't fussing, and I expected to find maybe a drop or two of juice on his lips, but it looked like he had been eating a whole bucket full (like Nora was doing)!

It's nice to know that he is still having some "normal" baby adventures!

I didn't think he had actually ingested any, but his diaper later that day proved otherwise. 

We had a wonderful time that day picking blackberries with two dear friends on another friend's property.  The girls enjoyed the swings and spinklers after they had their fill of berries.