July 22, 2011 Part 2

Please pray for Jackson...he was doing really well this morning with eating and then after his second feeding you could tell he didn't feel good.  He then proceeded to throw up several times and you could tell he just didn't feel good.  They give him medicine and it seems to be helping for now.  The doctor says that he might have sores in his throat from the chemo, so they might be giving him pain meds for that.  It is so hard to see my baby feeling awful.  His counts are starting to drop, so now we just wait.

July 22, 2011

Jackson is doing well today.  He went off of his IV fluids yesterday.  So he can at least move away from the crib now.  We are working on getting him to eat more still.  His eating feels like a constant battle.  No fevers since the chemo stopped. :-)  We are still waiting for a bigger room.  He is very playful today and happy! 

July 19, 2011

Jackson is on his last few hours of chemo today for round 3.  This round seemed to make him more sick to his stomach than the others.  Last evening he actually threw up (which was a first from chemo) They are giving him stuff to help make him feel better.  He hasn't had issues with fever in the last 24 hours, which is a blessing.  One of the chemo drugs Jackson gets is oral.  The first round I noticed that the oral chemo was a purplely color and smelled like grape and he would take it with little problem.  This time it was clear and he did not want it.  They decided yesterday that they would have to put in an ng tube(a tube that goes through the nose into his belly, he had one to eat with before his heart surgery) to get all the medicine in him.  I asked the doctor why the medicine was a different color and he said"it's a different color?"  I explained and he said "hmmmm...this medicine isn't flavored.  Let's try flavoring it before we try an ng tube."  So they did and he sucked it right down.  :-)  I don't understand why it wasn't flavored in the first place.  Thank goodness he didn't have to have a tube right now.  Please pray that his appetite will pick up especially after chemo is over.

July 17, 2011

Jackson is feeling better today!  He had a temp of 100.8 this morning, but now it has gone away(for now at least).  He was the happiest he has been in the last couple of days today.  Thank you for your prayers, we really appreciate them.  We also had a prayer request answered and that is that we have found a nanny for Jackson when I return to school!!! Praise the Lord!

July 16, 2011 Part 2

Please pray for Jackson his temperature got up to 104 degrees.  They have him on some meds and they seem to be helping.  I freaked out when I saw the temperature.  The doctor says it is normal for this kind of chemo. He is well drugged and sleeping.  Hopefully tomorrow he will feel better. 

July 16, 2011

Jackson did well yesterday.  They replaced his central line and did his spinal tap/chemo.  He was starving after they finally finished.  15 hours without eating is rough on a baby.  He ate 8 oz of pedialite and then ate 7 oz of formula 3 hours later.  They put us in a really small room until a big one becomes available.  Jackson is having a rough day today.  He spiked a fever due to the chemo and is so grumpy.  Please pray that he feels better soon.  The nurses made him a special hat to wear because chemo patients generally lose their hair (even though he still has his mohawk :-)  So here is a picture of him wearing it after surgery yesterday. 

July 14, 2011

Tomorrow we go back to the hospital for round 3.  The time at home with Jackson has been priceless.  You don't realize how important the little things are like being at home in the evening with your family or putting your baby to bed in his own crib until you don't have that anymore.  We report to the hospital at 6:15 tomorrow morning.  They will take blood and check counts.  They are assuming his counts will be good.  Unfortunately his central line does not work at all anymore, so they are going to replace it tomorrow.  They will also do a spinal tap while he is asleep and give him the first dose of chemo in his spine.  If all goes well they will start the continuous chemo tomorrow afternoon.  It feels like it has been forever with Jackson in the hospital but I know that it could be worse.  We are trying our best to have a good attitude and make the best of all situations.  When my  mom was here last week, we spent some time singing around the piano and we found this song that really encouraged us:

I trust in God wherever I may be
Upon the land or on the rolling sea
For come what may from day to day
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll
He keeps my soul
My Heavenly Father watches over me
He makes the rose an object of His care
He guides the eagle through the pathless air
And surely He remembers me
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll He keeps my soul
My Heavenly Father watches over me

July 1, 2011

We had our clinic appointment today.  They tried to get the line to work, but couldn't.  They got a small amount of TPA (a medicine that breaks up clots or blockage in the line) into the line, but still couldn't get it to flush.  Since he still has one working line, the doctor told us that it can wait until next chemo round, and that they might just use the one that is working and not replace the central line at all.  :-)  The doctor also told us that we get to spend an extra week at home.  Yeah!!!  So, his next appointment is July 15th.  We will see what his counts are then and they will probably admit him for round 3.  Thank you for praying, even though they couldn't get it to work the end result was a positive for us.  

June 30, 2011

Ok...so yesterday was not fun...We were told by the doctor to flush his central lines every other day while he is home.  So, last night we got everything out and the first line flushed great...the second line would not flush no matter what we did...so the doctor had told us if we have that problem to call the hospital immediately.  When I called I spoke to the Hematology doctor on call and explained to him what was going on.  I then asked him if it could wait until Friday at his clinic appointment. (Jackson is not on meds through his central line, so it wasn't an emergency.) He said no you have to come to the ER right away.  We arrived at the ER at 8 pm last night.  We waited in a room as nurse after nurse after doctor came in spoke a few words and left.  Finally at 2 am the nurse came in and said, "the doctor says this can wait until Friday's clinic appointment...WHAT?!?!?!?!  Didn't I just ask him that a few hours ago?  AHHH...so we arrived home at 3 am.  Poor Erik had to go to work on 2 hours of sleep.  So, tomorrow we go to our clinic appointment to try and get the central line to work.  If they can't get it to work they will have to replace it again. We really don't want that again.  Please pray that they will get it to work tomorrow. 

June 27, 2011

YEAH!!!! Doctor's gave Jackson the all clear to come home!!!! We are currently awaiting discharge orders and then Jackson is out of here!!! (at least until his next round)  We have to return on Friday for a clinic appointment, just to make sure that his blood counts are still coming up the way they should.  I am so excited to be able to spend some time at home with my precious little boy and with my mom.  It looks like it is going to be a great week! :-)  Thank you Lord, especially for the little things!

June 26, 2011

Jackson is doing well today.  His counts have come up some.  The doctor told us today that they took him off of antibiotics and are hoping that he will be able to come home tomorrow.  We are trying not to get our hopes up but are praying that it will work out.  The walls of the hospital are starting to close in on us! :-)  Jackson is very excited that his grandma Craven gets to come visit in 3 days!!!

June 22, 2011

Jackson is doing well today.  He is full of energy today and playing like he is making up for lost time. :-)  His counts are still low but are starting to go up slowly.  The doctor said today that it will probably be another week here...he could come home sooner if his counts really start to pick up.  Praying for a speedy blood count recovery.  His onesie fits his mood today...Tigger...bouncy bouncy...:-)

June 21, 2011

Jackson was on two antibiotics through the night (His fever went up to 102 in the middle of the night).  He will continue to be on antibiotics for the next couple of days. They seem to be helping because he is a different baby today.   He is still a little mellow but at least he isn't crying or fussy like yesterday.  I realized yesterday how spoiled I am with a happy baby.  I don't know what I would do if my baby cried all the time.  The doctor said his counts are status quo, not much difference.  The cultures they took yesterday are not growing anything yet, so they don't think it is an infection...just a result of low blood counts.  I am so thankful for medicines that make my baby feel better.  We really appreciate everyone's prayers. Thank you!

June 20, 2011

Today Jackson was very cranky...very unJackson like.   He is showing strong signs that he is teething.  I kept asking the nurse to come check his temperature because he felt so warm.  Jackson had a temperature of 101.  The nurses say this is to be expected because his counts are so low.  They took cultures of his lines to make sure that there is no infection and that the fever is due to counts.  They are going to give him Fortaz (an antibiotic) and some fluids to help with the fever.  Please pray that Jackson will feel better soon and be back to his normal happy self. 

June 19, 2011

Jackson is having a wonderful Father's Day with the best daddy in the world!!! (Alyssa is writing this :-) Jackson is doing ok today.  His counts are still low but no transfusions needed today.  We are all just having a great time hanging out together. 

June 16, 2011

Please pray that Jackson will eat more.  He is eating, but not as much as he normally does.  I still think it is because his blood counts are so low.  The nurses keep telling us to feed him as much as he will eat, and I think they are concerned too.  The doctor's tell us that this weekend is when Jackson is at the most risk to spike a fever, because that is when his blood counts will bottom out.   Jackson was visited by two occupational therapist this morning and seemed to really enjoy playing and practicing holding his body straight.  He really liked this toy...it lit up and played music...he was fascinated!!!

June 14, 2011

Jackson is having a good week so far.  He is active and happy.  Yesterday he had sweet potatoes for the first time.  The look on his face was priceless.  :-) His blood counts are dropping fast.  He has to bottom out before he can come up.  It has been nice being out of school so that I can spend more time with my baby!  I think he is going to cut a tooth soon.  He drools a lot now.  Jackson is so much fun to be around now that his little personality is coming out. 

June 10, 2010

Jackson had a rough day today.  His central line got a crack in it and it was not able to be fixed.  So the surgeon decided that the whole thing needed to be replaced.  So back to the operating room to get a new central line. For his surgery they had to put in an IV and again they had issues finding a vein. They stuck him 10 times and finally got one put in his head.   His blood counts were also very low which was to be expected and he received blood yesterday and platelets today.  He still greeted us with smiles and giggles. We got the ok from the nutritionist to start solid foods with him.  This will be interesting! :-)  Jackson enjoyed spending time with his Grandma Lundquist for the past week.  He is done with chemo for the second round but will remain in the hospital for the next couple of weeks as we ride the roller coaster of blood counts.   

June 7th, 2011

Jackson's past few days have calm and peaceful for the most part. June 1st and 2nd he received round 2 of chemo treatments and was released from the hospital as expected for 5 days. His appetite has decreased a little, but he still seems strong. This morning he was readmitted into the hospital for the follow up chemo treatments of this 2nd round. As commented in the earlier posts, He was to receive 1-3 days of chemo go home for 3-5 and return again for the next 3 days of chemo. He then will stay in the hospital for another 3 weeks minimum which again is followed by another break. After this round he only has 4 more rounds to go. His counts are down as expected. His platelet count during his break from round 1 of chemo to round 2 reached 400,000.( excellent number) (normal- 150-450 in thousands) Today his platelets are down to 74,000 and will progressively decrease through the next few weeks.  Through the past 5 days however,  Jackson has been able to enjoy sometime with his Grandma, who has been a wonderful help to Alyssa and I. God has given us a great blessing in Jackson, however He as also blessed us with so many others who have shown God's grace through their actions and words.

June 1, 2011

Well here we go...Round 2...Jackson was readmitted to the hospital yesterday.  His counts were all the way back up to normal so they can proceed with the second round.  The doctor's gave him one dose of chemo today and tomorrow he will get two kinds of chemo drugs.  If he doesn't spike a fever he will get to come home for a couple of days and then go back next Tuesday for the rest of his chemo.  Don't ask me why they do that...I asked and never really got a straight answer as to why he comes home during treatment.  Please pray that Jackson responds just as well to this treatment as he did with the last.