7 More Days to Discharge...?

Well, that's what the doctors are telling us at this point.  I'm trying to be hopeful, but I'm not holding my breath.  Although we have had no new developments in the last couple of days, I'm not foolish enough to think we're completely out of the water yet either.

I got to finally sit down with Dr. Mueller tonight and pelt him with questions about Jacob.  He was a good sport and very patient with me as I asked question after question, looking for clarification about all of the different information I'd heard from so many different sources over the last few weeks. 

We discussed Jacob's IV and what will happen when (not if) it fails and they have to take it out.  He explained that a lot has to do with how long the IV is able to work.  He's hoping that it will continue to work for another 3-4 days (I'm thinking we'll be lucky if we get another 24 hours - Jacob's already crying when they try to flush the line).  Once they have to pull the IV out, he will then get together with the doctor from the Center for Infectious Disease and find out what the chances of a rebound infection would be if they stopped antibiotics early.  If the doctor determines that the chances are still too high for baby Jacob then Dr. Mueller would have to weigh the physical pain it would cause Jacob to try to give him another IV (several pokes and likely an hour or more of digging and crying) versus the pain of 1 shot per day into his muscle for the duration of his antibiotic treatment.  He said that if the IV came out and they determined that there were just too many shots, he would personally go in and install a line using a local anesthetic.  He just didn't want to put him under general anesthetic a third time because it was affecting his feeding, which could ultimately affect the amount of time it took for him to leave the hospital. 

We discussed his blood and the clotting issues.  I asked a few more questions than he could answer (the problem with having so many doctors looking at so many aspects of Jacob.  The Hematologist just hadn't conveyed to him whether he had done testing on Jacob and what those results were).  So, I'm expecting a few more answers in the next couple of days once he's researched Jacob's file and has been able to get together with the blood doctor.  We discussed the fact that there is a history of clotting issues in our families.  My father had a stroke, one of my sisters had clots from her birth control pills, another sister had clots from a sprained ankle, and my brother - in - law has had several issues with clots after surgeries.  The question for us is whether that family history justifies the amount of blood that they may need to draw from Jacob in order to do the specialized testing needed to check for a blood disorder.  It's my guestimate that right now, because of his condition and the sheer amount of blood needed (we're not talking a few drops - more like viles of blood) to do the testing, they will just modify how they treat him following his surgeries taking into consideration his family history.  And if clotting continues to be a factor, THEN we'll re-address the clotting. 

Monday Jacob has yet another test, although I think this is the last major test they will be doing on him before discharge (knock on wood!)
 They will be injecting die into him through a catheter and checking all of his major organs to make sure that they are all functioning correctly and that there are no other issues that need to be addressed (See? Not holding my breath. There is STILL possibility for catastrophe).  I think they're wanting to double check the kidneys and look at the faulty valve further as well as see if there were any other issues that were accidentally missed. But if all goes well, it should be smooth sailing from there. 

I was talking to Cathy, one of Jacob's nurses and she was examining the area from Jacob's last pick line.  She noted that the suture was right on his jaw line, which she stated meant that every time he moved his head while he was sleeping, crying, being moved, re-positioned, etc it would cause tension on that line and that was most likely what had caused the line to come out the second time - bad placement of the sutures on a place where there would be lots of movement. 

All I can say at this point is "what's done is done".  Let's move on and quit focusing on what has happened, and focus on what we're going to do to fix the issue we have at hand - how are we going to get all of Jacobs administered to him in the least amount of pain.

AND ON A BRIGHTER NOTE:  I was holding Jacob today after a feeding and the little boy LAUGHED in his sleep!  This was not a gas bubble, or a little stutter from breathing issues, etc.  It was an all-out giggle (something I didn't experience with Courtney until she was well over 5 or 6 months old!).  I remember thinking to myself that I couldn't remember anything his short little life that he could draw from to make him so happy he'd want to giggle, but for the next 15-20 minutes, I'd see little glimpses of smiles on his face as he continued to dream.  It totally made my night.  I wished I'd been able to take a picture!

It was then that I decided that this little boy will bring nothing but smiles, laughter, and joy to our family when he finally gets to come home.  He will bring a whole new perspective of love and happiness that we have been unable to have on our own without him.  I'm looking forward to life at home with Jacob.  I'm looking forward to lots of smiling and oodles upon oodles of laughter and giggling.  For that, I am holding my breath and trying to wait patiently for that day to come. 

Hurry home Jacob! We're ready to start our lives with you!!

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

Tuesday 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! :)