Saturday, November 20, 2010

Family visits and taking time for myself while Jake is in the Hospital

Friday was a relatively good day.  Jacob's platelet counts are up to 71,000 which means that he is 29,000 away from the 100,000 goal that we need before the doctor will do his spinal tap for meningitis.  He is still modeling (splotchy look to his skin), but he is doing sooo much better this evening than he was last night.


KC came in bright and early this morning around 6 a.m. and took the day-shift for me.  He mentioned that he met with the Urologist who explained that his kidney issues needed to be addressed, but we needed to take care of the infections first.  So, they just wanted to put him on antibiotics until his surgery. 

Jacob spent most of the morning eating small quantities of milk in the morning, but the amount grew as the day wore on.  At one point he was up to 4 oz. again, but wound up throwing it ALL up again.  It's still kind of disconcerting that he's throwing things up, but I'm thrilled to see the progress (and lack of new developments) over the last 24 hours. 

I took the night shift again and had KC's family come visit.  Aunt Karen, Aunt Tonya and Grandma Allred all came and visited Jacob, held him and gave me some much needed 'adult' time.  Grandma Allred really seems to have the touch because she was the last to hold Jacob before they left and that little boy had some solid hard-core sleep time for a few hours after she left.  It was soo nice to have him sleeping so soundly and not waking up every 15 minutes because he was uncomfortable.

I even got to go home early - I left around 3:30 a.m. confident that he wouldn't be choking on his own phlegm or throwing up in his sleep and got to have 5 hours of my own hard-core sleep.  It was nice to wake up knowing I could face the world today.  :)

I came into the hospital room and saw Jacob sleeping like a baby.  Yay!  And aside from the occasional doctors visits and nurses checking on vitals, he's continued to sleep deeply for the last hour - thus my quick(ish) blog!!

They did another platelet count and said that his counts are up to 81, 000 (only 19,000 to go!), There is no longer ecoli in his urine and there are no new bad developments.  Dr. Mueller even mentioned we might get moved back to Pediatrics in the next day or two but said that they were in no hurry to kick us out ;)

Sooo, today is starting out to be a good day.  Hopefully, I won't have reason to get on this blog and write again today. No news is good news, right????

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Thursday, November 18, 2010

Difficulty with Jake's Pic Line and Balancing life with other children

Jake has Trisomy 21 and is in the hospital.  They have difficulty inserting his pic line and we have difficulty balancing attention between his other siblingsTuesday KC got to spend the day with Jacob while I spent my time with Courtney.  It seems that she is beginning to feel the affects of her parents being gone all the time, so she needed to have some 'normal' time with her mother. 

So, as I was being mom to Courtney, KC got to hold down the fort at the hospital.  He got to be there as they started his pick line - although they didn't finish it.  They tried around 10PM while I was in the hospital but his veins were "slippery" so they weren't able to complete the process and will try again in the morning. His poor little leg looks horrible, but what are you going to do?  If they can't do it, they can't do it.  The problem lies in the fact though that when they attempted to complete the pick line, they damaged the vein making it unusable, and therefore giving the nurses no way of being able to administer Jacob's antibiotic cocktail to him.  No antibiotics means he keeps getting sicker, and with the infections he has, that means death.  So, obviously administering no antibiotics was NOT an option.  This meant that the nurses had to put in a new IV....AGAIN.  And the odds weren't in Jacob's favor. 

Yep, you guessed it...another 1.5 hours of picks, prods, and digging at every available vein on his feet, arms, legs, head, back to his arms, back to his legs, and finally getting a vein to bleed and work in his wrist.  It's just so odd that a little boy who's platelet counts are dangerously low would have such a difficult time with clotting blood.  Hopefully the doctors will be able to come up with an explanation here VERY soon. Until then, we were just focusing on the need for a peripheral pick line into Jacob so that he doesn't have to go through the torture of IV pokes every night.

I wound up staying up with Jacob all night long and finally left around 4 a.m.  He just wasn't comfortable and had tried to throw up at around 1 a.m. so I opted to hold him on my chest all night long and make sure that he didn't throw up.

On Wednesday, we were promised that Jacob would get his pick line first thing in the morning, so KC made sure to be here right at 9 a.m. But by 6 p, when I got there, Jacob still didn't have his line in.  Luckily, the charge nurse went to bat with us and called the internal radiation dept. and go them to agree to do the pick line at 7:30 PM.  I followed Jacob down, met with the 5 people that would be working on Jacob and left my baby in the hands of a very experienced group of professionals.  I went upstairs and waited...and waited...and waited.  Finally, at nearly 10 PM they wheeled Jacob back into the room.  The anesthesiologist informed me that Jacob was "unpickable" and so they opted to put an IJ (interior jugular) pick line into him, which means that it was a bit more aggressive approach to a pick line but had a higher risk of infection as well (Great! Just what we need.  Another possible infection!). But at least he had his pick line which meant no more IV torture! I also discovered that even though he has clotting issues, he really has a problem with lack of clotting - ????  At the location where they had put the pick line in his internal jugular, they had sutured the skin to keep the IV from coming out and put some gauze over the area.  However, 5 minutes after they had left, the area had oozed blood so much that it was seeping out from under the tape and gauze and dripping down his arm.  So the nurses had to remove the original dressings and put a new dressing of gauze on his chest to help absorb the blood.   They had put Jacob on general anesthesia and put a breathing tube on him.  However, the tube really irritated his throat which left him hoarse and with a really raspy sound whenever he breathed. So, again, I spent the night with Jacob in my arms resting on my chest and taking care of him every time he wiggled, whined, or cried. Didn't leave until 5 a.m. so that I'd be home in time to take Elisha to early morning seminary.  Lo and behold, it was snowing as I left the hospital.


I took Elisha to seminary and stayed up to do the dishes, tidy up the house a bit, and take care of Courtney while KC got up, got ready to go see Jacob and take Nate to school. KC spent the afternoon at the hospital with Jacob and was told that Jacob is experiencing some modeling, which means that his skin looks kind of blotchy or like marble.  They seemed to think this was due to poor blood flow and possibly from fighting another infection. They said that they'd be keeping an eye on it. The guy from the Center for Infectious Disease also came in and told KC that they HAD to get the lumbar poke done on Friday to check for meningitis.  KC told him that we were being told that his platelets were too low to do the spinal tap.  The doctor told him that yes, the platelet counts were low, but they were high enough to do the tap, and that basically the benefits outweighed the risks. They needed to find out if he had meningitis because the antibiotics that Jacob is taking now would not fight meningitis and they needed to get him on the antibiotics quickly if did have it.  No pressure.  Jacob continues to breath VERY raspy breaths. They've been going in and suctioning fluid from his throat, but it still sounds pretty bad. Soooo, I'm in for another long night. Luckily, the Allreds are in town and have offered to take Courtney for a couple of hours in the morning so that I can get a few hours of shut-eye.  I can do all nighters. I'm no stranger to them because of my work at AC Bouquet making candy bouquets.  But 3 of them in a row is a bit excessive even for me.  Thank heavens for family!!!! They really are lifesavers! :)

Monday, November 15, 2010

Progress is Progress - Jacob's diagnosed with sepsis, e-coli, and possible meningitis

No doubt about it, yesterday was a TOUGH day.  But it's amazing what 12 hours can do to help your perspective.  That and the fact that when we came in to see Jacob this morning he was peacefully sleeping like a little angel.
 Jacob hanging out with his dad and sister
 Hus coloring was less dusky, and he looked like he wasn't in any pain (yay!)  We met with the doctors and nurses and discovered the following:

 Jacob LOVES his big sisterJacob's platelets had fallen last night to 17,000 and at one point his white blood cells were as low as 5,000 - neither of which are good numbers AT ALL.  They discovered that he has Sepsis ( http://en.wikipedia.org/wiki/Sepsis and http://en.wikipedia.org/wiki/Neonatal_sepsis ) which is a blood infection.  This means that they have put Jacob on 3 IV antibiotics.  They did not end up doing a platelet transfusion because when they checked his numbers again later in the evening they were rising on their own.  And since they did not do the transfusion, they did not do the lumbar poke (spinal tap) because they need the platelets to be higher to help combat infection and to 'plug' up the hole that his created when they take the spinal fluid from his back.  However, once the platelet counts are up, they still want to check the spinal fluid because they need to find out if the sepsis has spread to Jacob's brain.  If it has spread to his brain then the antibiotics will have to be administered for another week. Right now, the antibiotic regimen will be a 3 week process.  If the sepsis has spread to his brain, they will have him on IV antibiotics for 4 weeks.  This pretty much means that Jacob will be in the hospital for at least 3, and possibly 4 more weeks (sigh). 
 Jacob before his heart surgery - congenital heart defect
However, I can't help but feel blessed that they found the sepsis so quickly.  I had anticipated 3-day cultures and not having any answers until Wednesday.  The fact that they found the Sepsis so quickly means that they can treat it quicker, and were (hopefully) able to ward off any of the major side effects (or death) from it. And, from what I've read about Sepsis, this is not something you want to mess around with.  It's serious stuff, and darned near impossible to diagnosis in infants until you're at the major organ failure stage.  How blessed we were to already be in the hospital around all of the medical care he needed when he tanked last night. 

We also discovered later in the day that Jacob has e coli in his urine, but that issue should be resolved with the antibiotics he's already on.  They took another echo cardiogram this morning and told us that no damage was noted to the heart from his 'episode', so what that means is that once the antibiotics have run their course, the cardiologist will continue with Jacob's 3 new heart medicines which he will be taking until he has his heart surgery.

I'm getting the impression that waiting 6 months until his surgery is fairly unattainable - we're looking closer to the 3 month mark.  But I guess miracles can happen, so I'm choosing to hold out hope until someone sits me down and gives me a surgery date for Jacob. :\

Other than all of the new information to digest, today was pretty uneventful.  They let Jacob begin to feed again, so I got to bottle feed him today and cuddle with him (I think that was more for my benefit than his!) for a while.  And it was nice to hold him and know that today was a relatively pain free day for him.

At the end of the day, although we are faced with the fact that Jacob will be in the hospital another month, he is in good hands and he is making progress.

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When it Rains it Pours

Today (Sunday) KC and I went to the hospital with the assumption that we would be discharging Jacob from the Hospital.  He had responded well to the Lasiks and they were going to put him on two more medications for his heart.  We showed up at the hospital with a new outfit in hand and walked in to see our 3-week-old baby boy swaddled in his blanket in the bed sleeping so peacefully.  It was so nice to see him there so calm after such a hard weekend. 

Bucklee, our nurse, came in and introduced himself. He let us know that they had just given Jacob his latest dose of meds and tried to feed him, but he only took 1 ounce, so if we wanted to hold and feed Jacob that should be fine.  I, of course, immediately gathered my baby into my arms for a little bit o' lovin' and cuddled with him for a while.  I tried to offer him his bottle, but he just would have nothing to do with it.  Pretty soon, his heart monitor began spiking.  His heart rate would peak to the 190's (normal for Jacob is the 130's), setting off his alarm, then would go back down.  It did this several times over the next 1/2 hour, and I began to feel Jacob getting warmer and warmer. 

By the time Bucklee came back in to check on us, the monitor had alarmed almost 10 times and Jacob was beginning to look a bit listless and pale. The nurse took one look at him, broke out his stethoscope and began his inspection.  He suggested I put Jacob on the bed so that he could inspect him more.  Just as I began to lift him up to put him on his bed, Jacob began vomiting large amounts of formula.  Bucklee got him onto the bed and began calling for backup.  The alarms began sounding off, the cardiologist was paged repeatedly, and a frenzy of medical workers began working on our baby boy right before our eyes.

One person was trying to suction the milk from Jacob's mouth, nose, face, etc.  Another was putting a tube down his nose to suction any milk from his lungs, etc. Another was monitoring the heart rate and calling for an EKG. Another was checking his temperature (102.5 F), another was calling the cardiologist, another couple were trying to draw blood (to no avail - that boy just doesn't bleed!!!), and another was giving directions and making sure that all the bases were covered, etc.  It was chaos.  Finally, they got him stabilized and immediately took him back to Pediatric ICU.  Obviously our baby was NOT going home today.

After thing settled down a little, they took his EKG, took more X-Rays, Tylenol was given to bring down his temperature, and they were finally able to draw blood for almost 1/2 dozen different tests, it was determined that he most likely had the onset of some sort of infection and they needed to find out what it was and put him on antibiotics.

All KC and I could think about was how lucky we were to still be in the hospital when he 'tanked' like that.  Imagine the catastrophe it would have been if Jacob was home and that happened.  Yes, what happened was HORRIBLE.  I wouldn't wish it on my worst enemy, but it occurreded in the one place where it could be managed and stabilized by knowledgeable people quickly before any real harm or damage occurred. 

Eventually, KC and I quit hyperventilating, began talking to the doctors to assess what the 'episode' meant and where to go from there.  We let the nurses do their thing, and we tried to gather as much information about Jacob as possible.  Eventually, they put a tube into his stomach to help with the distention of his stomach, put Jacob on IV fluids and began feeding him through IV's until they were sure that he wouldn't throw up and inhale any fluids into his lungs.  They told us that as long as the IV was in, Jacob would be fed all the nutrients he needed, but he's still be hungry and would want to eat. 

So, when he began to cry, I picked him up to try to comfort him with a Binky.  That worked for a few minutes, until Jacob realized that it was me who was holding him and he decided he wanted to be fed NOW!!!  He began rooting around for food and getting madder and madder.  He was twisting as far around as he could, arching his back, stiffening up, etc.  Then, all of the sudden, his heart rate spiked again,  he stopped moving, his eyes rolled back, he immediately went limp in my arms and then became unresponsive.

KC immediately called the nurse, we put him on the bed and the nurses began again working on him to get him to wake up.  The doctors were called again, more assessments were made, more blood tests were taken, and we spent much of the rest of the evening shell-shocked.  The nurses came in to do more blood draws and I "took a walk" because I didn't think I could handle listening to another 1/2 hour of his screaming while they tried to draw blood from his little body.  KC stayed and rubbed his head to calm him while I wandered the halls for a while. 

When I came back, he told me that Jacob 'passed out' at least twice more while I was gone and was so lifeless during the blood draw he didn't even wiggle or cry.

We eventually found out that his platelets had fallen to below 17,000 (they had been 72,000 earlier in the day) which meant that they wanted to give him a platelet transfusion.  They still thought he had an infection, but didn't know what it was. They sent several blood tests out to for cultures, which would take about 3 days before we could get results, and they wanted to do a lumbar penetration, which basically meant that they wanted to take some spinal fluid from him in order to rule out meningitis. 

We met with a hematologist (blood doctor) and he explained to us the issues with his extra thick blood and their planned course of action (of course he ordered a couple of blood tests as well).  We talked to the cardiologist a few times and they decided to take Jacob off of two of his three medicines until he was stabilized.  And we had several nurses constantly coming in and out of his room over the course of the rest of the evening.

By the time we went home at 7:00 PM this evening KC and I were emotionally and physically spent.  Jacob was absolutely exhausted beyond belief as well.  But, to their credit, the hospital staff seemed to get Jacob to the point where he was turning a corner and beginning to get a little bit better.  We left that evening knowing that he was in good hands and counting down the minutes until we could see him again in the morning. 
 

Hopefully today will bring us much better news and a much healthier baby...

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